# picnichealth.com

> AI-optimized mirror of picnichealth.com containing 484 pages totalling 437,608 words of clean markdown content, structured data, and semantic HTML. Original source: https://picnichealth.com. Last updated: 2026-07-26T06:19:47.241Z.

Each page is available as HTML (with JSON-LD structured data) and Markdown (text-only, ideal for LLMs and RAG).

## Homepage

- [Help Center](/content/help/index.html) (136 words)
- [PicnicHealth: Your Complete Medical Records in One Place](/content/site-root.html): Organize your medical history, get personalized care plans, and understand your health story. PicnicHealth gathers records from all providers into one app. (315 words)

## Articles & Blog Posts

- [How do PicnicHealth’s AI features work?](/content/help/en/articles/2263808/index.html): Important: AI tools are not a substitute for professional medical advice, diagnosis or treatment. The Picnic AI assistant provides tools to help you m... (717 words)
- [Will my medical records be secure?](/content/help/en/articles/2260352/index.html): Thousands of people use PicnicHealth to track their health histories, so we take privacy very seriously. We’ll never share your data without your perm... (51 words)
- [Are you going to share information with my insurance company?](/content/help/en/articles/2260480/index.html): No. We never send any of your medical info to your insurance company. (101 words)
- [How will my doctor know it's OK to give you records?](/content/help/en/articles/2263232/index.html): When you first sign up for PicnicHealth, you sign a HIPAA authorization form which allows us to act on your behalf in requesting your medical records.... (60 words)
- [I’m having trouble logging in to my account. What should I do now?](/content/help/en/articles/2262720/index.html): This document provides guidance on how to recover your password, manage your email addresses, and ensure a smooth login experience with PicnicHealth. ... (208 words)
- [What is PHI?](/content/help/en/articles/2260032/index.html): PHI stands for Protected Health Information. It includes any information that a covered entity, like a provider or insurer, collects about one’s healt... (42 words)
- [Will you keep my records up to date? How will you know if I have new records?](/content/help/en/articles/2263296/index.html): At PicnicHealth, we prioritize the accuracy and timeliness of your medical records. To ensure that your health information is always current, we've ta... (240 words)
- [Can I see what my records will look like in my PicnicHealth account?](/content/help/en/articles/2263872/index.html): Yes! You can view a sample account  here . We call it your PicnicHealth Timeline because you can see your care journey from start to finish, with all ... (128 words)
- [I added the wrong information for one of my doctors, what now?](/content/help/en/articles/2263488/index.html): No problem, you can change your doctor information right in your account. To update your doctor information, follow these simple steps: Log in to your... (133 words)
- [If I volunteer to contribute my info to research, who will be able to see my medical records?](/content/help/en/articles/2260224/index.html): If you sign up to participate in a study, you're agreeing to share your medical records with PicnicHealth and researchers and organizations working wi... (98 words)
- [I’ve already collected some of my medical records. Can I send them to you?](/content/help/en/articles/2263168/index.html): Absolutely! Once you have signed up for PicnicHealth, you can easily upload any electronic record copies directly into your PicnicHealth Timeline. Fol... (153 words)
- [How can you make my records de-identified for research?](/content/help/en/articles/2260288/index.html): Our process is fairly sophisticated. We don’t just redact your records by crossing out or deleting your name. When preparing records to share with res... (133 words)
- [Can I delete my medical records from PicnicHealth?](/content/help/en/articles/2260416/index.html): You may choose to delete your medical records from PicnicHealth’s servers at any time and for any reason. Just email PicnicHealth at  help@picnichealt... (91 words)
- [Are there any types of records you can’t get?](/content/help/en/articles/2262976/index.html): We don’t get records from your dental cleanings or regular visits to the optometrist, but we will get records from related medical events, like notes ... (104 words)
- [Will I get records from my scans and imaging?](/content/help/en/articles/2263552/index.html): Yes! You will be able to view your imaging files right in the images section of your Health Dashboard. If you make a note that you had imaging done wh... (57 words)
- [How long will it take you to get my records?](/content/help/en/articles/2263040/index.html): When you first sign up, you should start seeing records appear on in just one day. Anything we aren't able to collect immediately, can take 4-6 weeks ... (115 words)
- [Child & Teenager Accounts](/content/help/en/articles/4872192/index.html): If your child is under 13, a parent or legal guardian must create and manage their PicnicHealth account. Your child will not have their own login — al... (532 words)
- [Can you request records from outside the US?](/content/help/en/articles/2263744/index.html): Currently, PicnicHealth only supports medical record collection from U.S. providers. We definitely want to expand to international record collection i... (71 words)
- [Can I share records with family and doctors?](/content/help/en/articles/2264000/index.html): Yes. If you click the "Share" button in the top bar of your account, you can add a new person to share your timeline with and see anyone you’ve shared... (150 words)
- [When I first view my PicnicHealth timeline, will it be complete?](/content/help/en/articles/2264064/index.html): When you first see your timeline, it's likely that some of your medical records are not yet available. That's because PicnicHealth is still working ha... (119 words)
- [I got an email about adding a new signature, how do I do that?](/content/help/en/articles/2262848/index.html): If we need a new copy of your signature, you can either click the link in the email you received or log in to your PicnicHealth account. In the top ri... (117 words)
- [What if I can’t remember the names of all of my doctors?](/content/help/en/articles/2263680/index.html): No problem. When you register, just tell us whatever you can remember. A doctor’s name along with their practice name or location is usually enough fo... (69 words)
- [What happens if I end my subscription or withdraw from a study? Can I take my records with me?](/content/help/en/articles/2263936/index.html): Your records are yours. You can always access the records we’ve already collected in your Timeline or download them for safekeeping, but some features... (61 words)
- [What should I do if I notice there are medical records missing from my PicnicHealth timeline?](/content/help/en/articles/2264128/index.html): In the first month, some records might be missing because PicnicHealth is still collecting them for you. Double-check your the status of our requests ... (105 words)
- [Who can sign up for PicnicHealth?
](/content/help/en/articles/2259712/index.html): There are two ways to get a PicnicHealth account. If you are eligible for one of our research studies, you can join a study and get a free PicnicHealt... (132 words)
- [Who is eligible to join a study?](/content/help/en/articles/2265088/index.html): It depends on the disease. Generally, you can join a study if you live in the U.S., have US medical records, and have been diagnosed with a disease th... (168 words)
- [How can I see records from only a particular doctor?
](/content/help/en/articles/2264448/index.html): When you’re looking at your Timeline, click the  filter  icon at the top right of your screen. This will open a dropdown of filter options. Click the ... (71 words)
- [How do I download my records?](/content/help/en/articles/2264576/index.html): To download specific health records, follow these steps: Click on the document you wish to open. This will display the details of the visit. To open t... (128 words)
- [How do I set up an account for someone else?](/content/help/en/articles/2259776/index.html): After you’ve created and verified your account, we'll ask you who you're collecting records for during the signup process. You can collect records for... (126 words)
- [I can’t get my signature to look right. Is there any other way for me to add it?](/content/help/en/articles/2259840/index.html): If you’re having trouble signing electronically on your computer or smartphone, you have the option of uploading a photo of your signature. Just write... (183 words)
- [Child or Teenager Participating in Research](/content/help/en/articles/4872256/index.html): This section is for teenagers and young adults participating in a research study with PicnicHealth. What You May Be Asked to Do You may be asked to si... (433 words)
- [Does PicnicHealth run clinical trials?
](/content/help/en/articles/2265216/index.html): Contributing your records for research through PicnicHealth is not a clinical trial, though sometimes they may be used in conjunction with a clinical ... (113 words)
- [What is the purpose of PicnicHealth studies?](/content/help/en/articles/2265024/index.html): Our goal is to power the next wave of breakthroughs in treating challenging diseases. Medical records document what living with the disease is really ... (162 words)
- [How do I create an account?
](/content/help/en/articles/2259648/index.html): To get started, go to  https://app.picnichealth.com/  and enter either your email or your mobile phone number. We’ll then send you an email or text me... (73 words)
- [Using Picnic AI](/content/help/en/articles/4871744/index.html): Picnic is PicnicHealth's built-in AI health assistant. It can help you find information in your records, understand medical terms, and organize your h... (409 words)
- [Who is sponsoring the study? Are there any third parties involved?](/content/help/en/articles/2265408/index.html): It depends on the disease. Some studies are sponsored directly by PicnicHealth, and some are sponsored by separate companies or organizations that do ... (215 words)
- [Downloading and Using the Mobile App](/content/help/en/articles/4871296/index.html): Note: The PicnicHealth app is for existing members only. You must already have a PicnicHealth account to use it. The app cannot be used to sign up for... (320 words)
- [If I participate in a study, will I see its results?](/content/help/en/articles/2265344/index.html): Yes! We believe it’s important for you to see the results of research produced using your records and we make every effort to share published results ... (127 words)
- [Participating in Research](/content/help/en/articles/4872064/index.html): The sections below apply only if you have signed up or are enrolled in a sponsored research study. If you are a PicnicHealth member and not enrolled i... (339 words)
- [How do I claim my compensation?](/content/help/en/articles/2266240/index.html): Your compensation is tracked and can be claimed right in the rewards section of your Research dashboard. After you click ‘ claim ’, your payment will ... (109 words)
- [Logging In to Your Account](/content/help/en/articles/4871360/index.html): Your PicnicHealth account can be accessed from any computer, tablet, or smartphone using your web browser of choice or our free mobile app. To log in:... (255 words)
- [Managed PicnicHealth Accounts](/content/help/en/articles/4872128/index.html): You can manage a PicnicHealth account for someone else—or have someone manage your account on your behalf. This includes children, parents, partners, ... (260 words)
- [Why do you need my Social Security Number?](/content/help/en/articles/2259904/index.html): We need the last 4 digits of your social security number (SSN) in order to retrieve your medical records from your doctor. Most doctor’s offices requi... (106 words)
- [How many doctors should I add?](/content/help/en/articles/2259968/index.html): As many as you'd like - but, ideally, you should add every doctor or hospital you’ve seen in the past 7+ years. If you don’t recall all of their infor... (72 words)
- [How do I reach the PicnicCare clinical team?](/content/help/en/articles/2266560/index.html): Shortly after you sign up, our clinical team reviews your medical history and will work with you to make sure it's accurate. In turn, our clinicians w... (82 words)
- [How do I change the credit card associated with my account?](/content/help/en/articles/2262592/index.html): Log in to your PicnicHealth account and navigate to the Billing Details section of the Account Settings page. From there, you can add a new card, edit... (122 words)
- [How does insurance billing work?](/content/help/en/articles/3036416/index.html): You have the option to bill connected care visits to your insurance. If available, you will be presented with information about expected costs at the ... (68 words)
- [What does PicnicCare do?](/content/help/en/articles/2266880/index.html): PicnicCare is a healthcare provider organization, employing clinical experts who can work with, and on behalf of, you (or your loved one’s) healthcare... (129 words)
- [Does PicnicCare keep my information private?](/content/help/en/articles/2266688/index.html): PicnicCare is 100% committed to your privacy and confidentiality. We’ll never share your data without your permission. We’re HIPAA compliant and use e... (48 words)
- [Claiming Rewards](/content/help/en/articles/4872000/index.html): Occasionally, PicnicHealth offers compensation to its app users, for example for completing study activities. If you have compensation to claim, you w... (166 words)
- [Does PicnicCare accept insurance?](/content/help/en/articles/2266816/index.html): Yes, PicnicCare can bill your insurance for Connected Care Visits. However, PicnicCare is currently not in-network with insurance providers, meaning y... (62 words)
- [Can I opt out of PicnicCare?](/content/help/en/articles/2266624/index.html): We'll invite you to sign up for PicnicCare when you sign up for PicnicHealth, however your enrollment is completely your choice. If you would like to ... (49 words)
- [How much do virtual care services cost?](/content/help/en/articles/2266752/index.html): While most preventive care and asynchronous virtual services are provided at no additional cost with PicnicHealth membership, certain clinician-led vi... (50 words)
- [I think I was billed incorrectly, what should I do?](/content/help/en/articles/2260544/index.html): Please email  help@picnichealth.com  directly if you believe you were charged incorrectly. If possible, please provide a copy of your receipt(s) so we... (123 words)
- [What is the purpose of these surveys?](/content/help/en/articles/2265984/index.html): The purpose of these surveys is to gather information directly from patients about their experiences with a medical condition or treatment. By collect... (199 words)
- [How does compensation work?](/content/help/en/articles/2266368/index.html): Some PicnicHealth studies and surveys are compensated, meaning you can receive money by taking part. If a study or survey is compensated, it will be i... (105 words)
- [Where do I take my survey?](/content/help/en/articles/2266176/index.html): Once you have successfully logged in, you will be directed to your PicnicHealth Research Dashboard. Here, you will find a list of open surveys that ar... (148 words)
- [How long will it take to be compensated?](/content/help/en/articles/2266304/index.html): Compensation for taking part in a qualifying PicnicHealth study or survey is sent out after we are able to verify your diagnosis and fully qualify you... (144 words)
- [What does PicnicHealth do?
](/content/help/en/articles/2254144/index.html): PicnicHealth collects, digitizes, and secures your medical records—then arranges everything in one intuitive timeline. No need to worry about a note f... (131 words)
- [How does study compensation work?](/content/help/en/articles/2266432/index.html): Some PicnicHealth studies are compensated, meaning you can receive money by taking part. If a study is compensated, it will be indicated on the web pa... (88 words)
- [How does survey compensation work?](/content/help/en/articles/2266496/index.html): Once you’ve qualified for the study and completed the survey, you can claim your compensation under the reward section of your PicnicHealth account. Y... (81 words)
- [How much does PicnicHealth cost?](/content/help/en/articles/2262528/index.html): PicnicHealth's services are totally free for research participants.  If you decide to stop participating, you'll still have access to all your past re... (77 words)
- [Not Found](/content/blog/dent-in-sarahs-skull-was-g-s-d-or-vanishing-bone-disease.html) (33 words)
- [Not Found](/content/patients/resources/blog/living-with-igan-sarahs-story/index.html) (33 words)
- [Not Found](/content/blog/gm2-patient-and-licensed-builder-says-he-wont-give-up.html) (33 words)
- [Not Found](/content/patients/resources/blog/top-kidney-disease-content-creators/index.html) (33 words)
- [Not Found](/content/patients/resources/blog/kidney-biopsy-patients-guide/index.html) (33 words)
- [Not Found](/content/patients/resources/blog/understanding-your-igan-labs/index.html) (33 words)
- [Not Found](/content/blog/patient-wants-people-with-rare-diseases-to-be-treated-like-everyone-else.html) (33 words)
- [Not Found](/content/blog/allstripes-ambassador-program/index.html) (33 words)
- [Not Found](/content/research/index.html) (33 words)
- [Not Found](/content/blog/first-person-world-found-with-variant-of-p-i-k3-c-a-gene.html) (33 words)
- [Navigating PicnicHealth](/content/help/en/articles/4872384/index.html): Once you log in, you’ll land on your home screen, where you can access key areas of your account: Available to all users Health Dashboard  — Access yo... (1,060 words)
- [What does “informed consent” mean?](/content/help/en/articles/2260096/index.html): Informed consent is the process for ethically obtaining a patient’s approval to perform healthcare services or disclose health information about them.... (178 words)
- [Not Found](/content/program/itp/index.html) (33 words)
- [How do I cancel my account?](/content/help/en/articles/2262784/index.html): We’ll be sad to see you go, but if you need to cancel your account for whatever reason, send an email to  help@picnichealth.com . You can also cancel ... (84 words)
- [What is HIPAA?](/content/help/en/articles/2260160/index.html): HIPAA stands for the Health Information Portability and Accountability Act. It’s a U.S. law that was passed in 1996. The law has several elements, inc... (73 words)
- [After I have volunteered to contribute my info to research, can I stop participating in a study?](/content/help/en/articles/2265152/index.html): Yes. Your participation in any study is completely voluntary and you can withdraw at any time. If you choose to stop participating, your medical recor... (101 words)
- [I noticed an error on my timeline, how can I get it fixed?](/content/help/en/articles/2264320/index.html): If you notice an error in your PicnicHealth Timeline, click on the three dots in the top bar of the visit with the issue and select  Report Issue . In... (78 words)
- [How far back can you get my records?](/content/help/en/articles/2263104/index.html): Doctors are only legally required to keep records for 7 years in some states and we generally don’t see them go much farther back than 10. By 15 years... (54 words)
- [My doctor charges me fees to get copies of my records. Will you pass those on to me?](/content/help/en/articles/2262912/index.html): Absolutely not. We always ask offices to send us the bill directly, but if you get one accidentally just send a copy of the invoice to  help@picnichea... (55 words)
- [PicnicHealth Virtual Clinic ](/content/help/en/articles/4872320/index.html): PicnicHealth Virtual Clinic is PicnicHealth's healthcare provider organization. It employs clinical experts — including nurse practitioners and physic... (606 words)
- [Help Center](/content/help/en/index.html) (124 words)
- [Privacy & Security](/content/help/en/categories/429568-privacy-security/index.html) (290 words)
- [Record Collection](/content/help/en/categories/430848-record-collection/index.html) (450 words)
- [Your Account](/content/help/en/categories/430784-your-account/index.html) (160 words)
- [Signing Up](/content/help/en/categories/429504-signing-up/index.html) (260 words)
- [Using Your Timeline](/content/help/en/categories/430912-using-your-timeline/index.html) (372 words)
- [Participate in Research](/content/help/en/categories/431296-participate-in-research/index.html) (227 words)
- [PicnicCare](/content/help/en/categories/431488-picniccare/index.html) (231 words)
- [PicnicHealth User Guide](/content/help/en/categories/772224-picnichealth-user-guide/index.html) (332 words)
- [
      PicnicHealth — Your Medical Record Concierge
    ](/content/demo/care/index.html): PicnicHealth gives you secure online access to your health records. We request records, create a clear medical timeline, and keep your doctors informed. (76 words)
- [Compensation Rewards](/content/help/en/categories/431424-compensation-rewards/index.html) (181 words)
- [Study Activities](/content/help/en/categories/431360-study-activities/index.html) (158 words)
- [Pricing & Payment](/content/help/en/categories/429632-pricing-payment/index.html) (107 words)
- [What If the Wearable Is Hard to Use or Inaccessible to Me?
](/content/help/en/articles/4903552/index.html): We want the wearable to work for you, not against you. If using it is difficult for any reason, the study team can help. Reach out if you're experienc... (186 words)
- [
      PicnicHealth — Your Medical Record Concierge
    ](/content/demo/rewards/index.html): PicnicHealth gives you secure online access to your health records. We request records, create a clear medical timeline, and keep your doctors informed. (19 words)
- [Contact us](/content/help/en/contact-us/index.html) (102 words)
- [About PicnicHealth](/content/help/en/categories/429440-about-picnichealth/index.html) (34 words)
- [What if my study wearable device breaks or is lost?](/content/help/en/articles/4903488/index.html): If your wearable is lost, damaged, or won't turn on or charge, we'll send a replacement at no cost to you. Contact the study team at help@picnicresear... (109 words)
- [Not Found](/content/patients/resources/blog/beyond-the-diagnosis/index.html) (33 words)
- [Mandy Is the First Person in the World Found With This Variant in the PIK3CA Gene](/content/learn-more/mandy-is-the-first-person-in-the-world-found-with-this-variant-in-the-pik3ca-gene-c07ed.html): Mandy was born with overgrown lower limbs and a club foot. It took 30 years to find out the true cause. (1,316 words)
- [Introducing New Care Features to Simplify Your Health Journey](/content/learn-more/new-care-features/index.html): For the past decade, PicnicHealth has been dedicated to giving you control of your health by providing access to your complete medical records. We’ve had the privilege of working with tens of thousands of patients, most of whom live with chronic diseases, and through countless conversations, one thing has become crystal clear: managing complex care journeys is a huge challenge. Between juggling multiple specialists and keeping track of different treatment plans, it’s easy to feel both overwhelmed and that no single doctor sees the full picture. (1,374 words)
- [Lindsay Helps Teens With Physical Differences Embrace Who They Are](/content/learn-more/lindsay-helps-teens-with-physical-differences-embrace-who-they-are.html): She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome. (1,489 words)
- [My PNH Journey: The Power of a Diagnosis](/content/learn-more/my-pnh-journey-the-power-of-a-diagnosis/index.html): Hear the story of a real PicnicHealth user, Maegan, and her experiences as she has recently received a diagnosis of paroxysmal nocturnal hemoglobinuria and is now living with a rare disease and constructing a new normal. (2,122 words)
- [IgA Nephropathy Symptoms: Signs You Should Look Out For](/content/learn-more/iganephropathy-symptoms-and-signs/index.html): Understanding IgA Nephropathy, Recognizing it’s Symptoms and Signs. Empowering early recognition for timely intervention and effective management. (1,929 words)
- [No Family Facing a Rare Diagnosis Should Get Outdated Information](/content/learn-more/no-family-facing-a-rare-diagnosis-should-get-outdated-information.html): After our daughter was diagnosed with Kabuki syndrome, we were given outdated educational material. I don’t want that to happen to anyone else. (1,938 words)
- [My PNH Journey: The Fight Continues](/content/learn-more/my-pnh-journey-the-fight-continues/index.html): Hear from a real PicnicHealth user, Maegan, and her experiences living with paroxysmal nocturnal hemoglobinuria as she continues her journey and finds peace with her diagnosis and raises awareness for the rare disease community. (1,672 words)
- [‘My Purpose Right Now Is to Help Her Be the Best She Can Be’](/content/learn-more/my-purpose-right-now-is-to-help-her-be-the-best-she-can-be.html): Lara is the mother of Eden, a bubbly 13-year-old with a rare condition. After years of symptoms, Eden was diagnosed with Kleefstra syndrome at 8 years old. (1,338 words)
- [Kristen's Journey With Limb-Lengthening & Achondroplasia](/content/learn-more/i-will-always-have-dwarfism/index.html): For me, undergoing a controversial treatment like limb-lengthening was another opportunity to use my voice. (1,680 words)
- [PicnicHealth | Navigating Life with Achondroplasia: Brynn's Story](/content/learn-more/navigating-life-with-achondroplasia-brynns-story/index.html): In a world where each child's journey is unique, Brynn’s story stands out for its strength and resilience. Diagnosed with achondroplasia, Brynn, and her family, have navigated a path filled with challenges, discoveries, and immense love. (1,281 words)
- [How Montessori Practices Can Support Dementia Caregivers](/content/learn-more/montessori-dementia/index.html): Maria Montessori is famous for revolutionizing child development and education, but people of all ages can benefit from the Montessori approach, especially when learning new things. Applying Montessori principles to Dementia Care doesn’t infantilize people living with Dementia. Similarly to children, it empowers them to be independent and creative. For people living with Dementia, each day is an opportunity to rebuild, discover, and learn, and it’s on us to support them. If we embrace this growth mindset, imagine the possibilities. (1,270 words)
- [‘It’s Okay to Talk About It’](/content/learn-more/its-okay-to-talk-about-it/index.html): Three men from the rare disease community discuss the importance of mental health support. (1,352 words)
- [‘I Would Gladly Trade My Disability Plate for a Cure’](/content/learn-more/i-would-gladly-trade-my-disability-plate-for-a-cure.html): John was diagnosed with late-onset Tay-Sachs, and now he's raising awareness about the condition while continuing to pursue his passions. (1,455 words)
- [Not Found](/content/patients/resources/blog/igan-treatment-options/index.html) (33 words)
- [CIDP Prognosis: What to Expect and Why Research Still Matters](/content/learn-more/living-with-cidp-prognosis/index.html): Learn what CIDP prognosis really looks like, including long-term outlook, treatment expectations, remission, relapse, and why ongoing research still matters. (1,375 words)
- [Not Found](/content/patients/resources/blog/index.html) (33 words)
- [PicnicHealth | A Closer Look at Rare Patient Voice's Role in Research](/content/learn-more/making-a-difference-a-closer-look-at-rare-patient-voices-role-in-research.html): In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases. (1,543 words)
- [Not Found](/content/patients/resources/blog/iganephropathy-symptoms-and-signs/index.html) (33 words)
- [Living with IgAN: My Personal Story](/content/learn-more/living-with-igan-sarahs-story/index.html): Sarah Yu shares her experience living with IgAN, including her diagnosis story, overcoming challenges, lifestyle changes that have supported her, and things she wishes people understood about the IgAN experience. (1,709 words)
- [Kidney Biopsy for IgAN: Understanding the Procedure and Its Importance](/content/learn-more/kidney-biopsy-patients-guide/index.html): Are you about to undergo a kidney biopsy? Learn about what a biopsy is, what it reveals, how to prepare, and post-biopsy care in this comprehensive guide. (1,565 words)
- [PicnicHealth | Journey of Understanding: A Family's Experience with Achondroplasia](/content/learn-more/journey-of-understanding-a-familys-experience-with-achondroplasia.html): The journey of Janet's family into the world of achondroplasia began unexpectedly when their baby girl was diagnosed at four months old. (989 words)
- [My Son Graham](/content/learn-more/my-son-graham/index.html): It’s perhaps my greatest honor that while I lost Graham physically, I carry him every day to work with me. (1,192 words)
- [New Data Presented from LC-FAOD Odyssey](/content/learn-more/new-data-presented-from-lc-faod-odyssey/index.html): Long-chain Fatty Acid Oxidation Disorders (LC-FAOD) are a group of rare conditions that impair the body’s metabolism from breaking down certain fats from food into energy. Although there are an estimated 2,000-3,5000 people living with LC-FAOD in the U.S., researchers have limited data on how LC-FAOD progresses overtime and how it is managed in the real world. (807 words)
- [‘Keep Looking, Keep Working and Keep Fighting’](/content/learn-more/keep-looking-keep-working-and-keep-fighting/index.html): Yohanna’s son, Xander, was finally diagnosed with a rare condition known as SLC6A1 when he was two. Now, she has a message for other parents currently searching for a diagnosis. (1,208 words)
- [Lifting Up Legacy Families](/content/learn-more/lifting-up-legacy-families/index.html): I’ve realized how much families like mine can help families currently dealing with the everyday challenges of NPC. (1,475 words)
- [Living With a Rare Disease Is Not Cheap](/content/learn-more/living-with-a-rare-disease-is-not-cheap/index.html): As the founder of Myositis Support and Understanding Association (MSU), I’ve seen and experienced how far-ranging the impact of living with a rare disease like dermatomyositis can be. (1,437 words)
- [PicnicHealth | Navigating the Holidays with a Chronic Illness](/content/learn-more/navigating-the-holidays-with-a-chronic-illness/index.html): The first of November has sort of always been the mental marker for me to “up my game” for the Holiday Season. (1,137 words)
- [‘Make Sure You Find a Support System’](/content/learn-more/make-sure-you-find-a-support-system/index.html): Sherman, who has CIDP, shares his advice for others in the rare disease community. (1,426 words)
- [Jessie’s Son’s CCM3 Diagnosis Unlocked a Family Medical Mystery](/content/learn-more/jessies-sons-ccm3-diagnosis-unlocked-a-family-medical-mystery.html): A seizure and a medical conundrum from her husband’s past were the clues to a condition that affects Jessie’s whole family. (1,361 words)
- [Karen Wants More People to Know Her Son — and to Learn About Lesch–Nyhan Syndrome](/content/learn-more/karen-wants-more-people-to-know-her-son-and-to-learn-about-lesch-nyhan-syndrome.html): Karen would rather people take a straightforward interest in Doug than stare at him. (978 words)
- [Love, Challenges, and Advocacy in the World of CAH](/content/learn-more/maddoxs-journey-love-challenges-and-advocacy-in-the-world-of-cah.html): Walking through life with salt-wasting congenital adrenal hyperplasia (CAH) brings its own set of ups and downs. For Taylor and her son, Maddox, it’s a path marked by sudden storms and sunny days, a mix of medical emergencies and moments of pure childhood joy. Here’s their story, told with the warmth and honesty that Taylor brings to every conversation. (1,282 words)
- [‘Just Keep Grinding’: How Jareb Deals With Wilson Disease](/content/learn-more/just-keep-grinding-how-jareb-deals-with-wilson-disease.html): Jareb began experiencing symptoms of Wilson disease when he was a preteen. Today, he uses diet and medication to manage his condition, and has made creative adaptation in his work life. (1,233 words)
- [PicnicHealth | Mandy Is the First Person in the World Found With This Variant in the PIK3CA Gene](/content/learn-more/mandy-is-the-first-person-in-the-world-found-with-this-variant-in-the-pik3ca-gene.html): Mandy explains she has a “mutated PIK3CA gene” which causes cells in certain parts of her body to divide too quickly and survive longer than they should. This leads to an overgrowth of bodily tissue. (1,252 words)
- [‘It Is Time for Patients to Gain More Power Over Their Health’](/content/learn-more/it-is-time-for-patients-to-gain-more-power-over-their-health.html): The Children’s Tumor Foundation, an AllStripes partner, is on a mission to show the value of patients’ voices and inclusion in the decision-making process. (1,257 words)
- [Manuel Wants to Make Sure Newcomers to the IBM Community Get Support From the Start](/content/learn-more/manuel-wants-to-make-sure-newcomers-to-the-ibm-community-get-support-from-the-start.html): Manuel sees the people around him as his greatest strength, and believes that finding the IBM community has given him purpose. (1,270 words)
- [It’s Not ‘Just’ Fatigue](/content/learn-more/its-not-just-fatigue/index.html): Getting diagnosed with Fabry disease was a relief in some ways — to know that there was actually something wrong. (1,037 words)
- [After a wAIHA Diagnosis, I Know Remission Isn't a Gaurantee](/content/learn-more/i-know-remission-isnt-a-guarantee/index.html): If contributing my medical records to research can help someone else with wAIHA someday, then that’s wonderful. (1,717 words)
- [I’m Grateful for Every Moment I Get to Spend Alive and Well](/content/learn-more/im-grateful-for-every-moment-i-get-to-spend-alive-and-well.html): In his own words, Thomas shares his experience growing up with Crigler-Najjar Syndrome, Type 1, and receiving a liver transplant that changed his world. (1,005 words)
- [Jana and I Were Each Other’s Friends](/content/learn-more/jana-and-i-were-each-others-friends/index.html): Our parents wanted us to feel "normal," but we didn't feel normal at all. (1,188 words)
- [I Learned I Couldn’t Do This Alone](/content/learn-more/i-learned-i-couldnt-do-this-alone/index.html): The same goes for NPC research — we need community participation to move it forward. (1,417 words)
- [Lifestyle Changes to Manage IgAN Care](/content/learn-more/lifestyle-changes-for-igan-care/index.html): Learn how lifestyle changes can help support kidney health and reduce stress on the urinary system for people living with IgA Nephropathy. Our guide covers the most effective dietary and lifestyle changes for managing IgAN care. (767 words)
- [‘It’s About More Than Just Me’](/content/learn-more/its-about-more-than-just-me/index.html): How Julianne, a young adult with Gorham-Stout disease, is pushing past her own discomfort to help others. (1,249 words)
- [Life With Leigh Syndrome Is Even Bigger Than I Thought It Would Be](/content/learn-more/life-with-leigh-syndrome-is-even-bigger-than-i-thought-it-would-be.html): Collaboration is key, and that's what we need more of in research. (1,123 words)
- [IgAN Treatment: Options for Managing Symptoms and Supporting Kidney Health](/content/learn-more/igan-treatment-options/index.html): Learn about the most effective treatment options for IgA nephropathy, including corticosteroids, immunosuppressants, and dietary changes. Our guide will help you manage symptoms and support your kidney health. (1,309 words)
- [I Learned Everything I Know About Wheelchairs on YouTube](/content/learn-more/i-learned-everything-i-know-about-wheelchairs-on-youtube.html): Sometimes, my experience with IBM leaves me feeling amazed at how hard it is to figure everything out. (1,516 words)
- [Not Found](/content/blog/progressive-supranuclear-palsy-story-transcript/index.html) (33 words)
- [Mick Has a Daily Practice for Coping With His CIDP Diagnosis](/content/learn-more/mick-has-a-daily-practice-for-coping-with-his-cidp-diagnosis.html): “For 30 minutes in the morning, I allow myself to feel sorry for myself. But after 30 minutes, I have to go to work. And next thing you know, you’re back and making dinner.” (736 words)
- [‘I Have More Hope Now Than I Ever Did Before’](/content/learn-more/i-have-more-hope-now-than-i-ever-did-before/index.html): In 2018, Amy was diagnosed with VCP disease. While adjusting to life with a rare disease hasn’t been easy, she has become more spiritual and focused on self-care. (1,360 words)
- [When Is a Kidney Transplant Necessary for IgAN Patients? The Procedure Explained](/content/learn-more/igan-and-kidney-transplant-guide/index.html): Are you an IgAN patient considering a kidney transplant? Learn about the eligibility criteria, the transplant procedure, and post-transplant care in this comprehensive guide. (1,569 words)
- [Life with IgA Nephropathy: What to expect after diagnosis](/content/learn-more/life-with-iga-nephropathy-what-to-expect-after-diagnosis.html): IgA Nephropathy life expectancy — what you need to know about navigating life with IgAN and how PicnicHealth can help you manage this condition while moving medical research forward. (662 words)
- [IBD vs IBS: What's the difference?](/content/learn-more/ibd-vs-ibs-whats-the-difference/index.html): Learn about the difference between IBD vs IBS. Inflammatory bowel disease includes diseases like Crohn's disease and ulcerative colitis, whereas irritable bowel syndrome can cause pain but doesn’t lead to life-threatening complications. (576 words)
- [Fabry Disease, Mental Health & Young People](/content/learn-more/i-think-you-should-get-upset-about-big-things/index.html): Two brothers reflect on being diagnosed with Fabry disease at 15 and 19, entering adult care at young ages and the urgent need for mental health support. (1,157 words)
- [How PicnicHealth supports research and the sickle cell community](/content/learn-more/how-picnichealth-supports-research-and-the-sickle-cell-community.html): Learn about PicnicHealth's mission to support research into new treatments for sickle cell disease, and how we hope to support the sickle cell community. (1,222 words)
- [PicnicHealth | It’s OK If You Don’t ‘Grow Bolder As You Grow Balder’ with Breast Cancer](/content/learn-more/its-ok-if-you-dont-grow-bolder-as-you-grow-balder-with-breast-cancer.html): TO WHOM IT MAY CONCERN: What’s the most favorite thing about yourself? My answer used to be my thick hair. It was organically long, healthy, and shiny. I used to follow the Asian stereotype where nothing about my body was #thiccccc, except my hair. Any time I used to get my hair trimmed, stylists would always admire how healthy my hair was. Any time the nasty stenches of NYC would creep up my nostrils, I would use my hair as a shield and sniff the residual fragrances from my shampoo. Any time I felt anxiety, I would use it as a security blanket and twirl it. Any time there was a fun social event, I would get my hair done to match the theme of my outfit. Any time Paul and I would cuddle, he would play with it. My hair was my identity.I was scared shitless of losing both my breasts and hair, but I honestly struggled more with the thought of losing my hair. In general, people can see your head at first glance since it’s always fully exposed. Breasts are only visible to those you give consent. I was terrified of losing the freedom of wearing my hair how I wanted as an expression of my identity. (801 words)
- [‘It’s Important to Us That People Know Who She Was’](/content/learn-more/its-important-to-us-that-people-know-who-she-was/index.html): Caitrin lost her daughter to Sandhoff disease and sees contributing to research as one way to make sure Embree's memory lives on. (932 words)
- [HIPAA Notice of Privacy Practices | PicnicCare Clinic](/content/our-clinic/notice-of-privacy-practices/index.html): Review PicnicCare's HIPAA Notice of Privacy Practices. Learn how we protect your health information, your privacy rights, and how your medical data is used. (2,939 words)
- [How Stephan Learned to Cope With His Son’s Completely Unexpected Diagnosis of SURF1-Associated Leigh Syndrome](/content/learn-more/how-stephan-learned-to-cope-with-his-sons-completely-unexpected-diagnosis-of-surf1-associated-leigh-syndrome.html): Today, Ben is 5 years old. Stephan describes him as the funniest and smartest person he knows and a “very wise soul.” (1,348 words)
- [How PicnicHealth is supporting more inclusive research on MS](/content/learn-more/how-picnichealth-is-supporting-more-inclusive-research-on-ms.html): PicnicHealth is proud to partner with WeAreILL to empower women of color living with MS to get better access to their medical records and to contribute to research on their terms. (1,139 words)
- [‘Growing Up, I Was Different From Everyone Else’](/content/learn-more/growing-up-i-was-different-from-everyone-else/index.html): James and Andrea discuss living with a PIK3CA-related overgrowth spectrum diagnosis and isolation, the power of contributing medical records to research — and what adults can learn from kids’ reactions to physical differences. (1,958 words)
- [I Know Firsthand the Treatment Options Are Not Adequate](/content/learn-more/i-know-firsthand-the-treatment-options-are-not-adequate.html): Bethany, the co-founder of the Allo Hope Foundation, describes how her experience with alloimmunization and HDFN changed her life forever. (1,504 words)
- [I Advocate Not Only For Melissa, But For All People With PA](/content/learn-more/i-advocate-not-only-for-melissa-but-for-all-people-with-pa.html): It’s important us PA parents keep using our voices to push for more research. (1,760 words)
- [How Patient Experiences Help The Fight Against Alzheimer’s](/content/learn-more/how-real-patient-experiences-can-make-a-difference-in-the-fight-against-alzheimers.html): It’s an exciting time for Alzheimer’s disease research. The FDA approved the first new drug for Alzheimer’s in nearly 20 years in June 2021, and other potential treatments, targeting amyloid plaques in the brain, are making their way through clinical trials.1, 2 It’s a glimmer of hope for Alzheimer’s patients, who number over 6 million in the U.S. alone. (1,087 words)
- [How I Start Conversations About Sickle Cell](/content/learn-more/how-i-start-conversations-about-sickle-cell/index.html): People I meet ask me what I do and I say, “I write children’s books for kids with sickle cell disease.” (1,906 words)
- [‘I Decided to Fight Like a Mother’](/content/learn-more/i-decided-to-fight-like-a-mother/index.html): "I’m not someone who has ever asked for help," says Kim, whose son Charlie lives with a rare disease referred to as SLC6A1. "I don’t do it in any other aspect of my life. But in this situation, I have no choice: ask for help or watch my son suffer.” (1,073 words)
- [How Having a Rare Disease Took a Toll on Leah’s Friendships](/content/learn-more/how-having-a-rare-disease-took-a-toll-on-leahs-friendships.html): Leah found that living with myasthenia gravis (MG), an “invisible” disease, was often misunderstood by her friends and family. But with incredible strength and positivity, Leah has navigated through her hardships and now celebrates a community dedicated to uplifting rare disease patients. (1,433 words)
- [How a PicnicHealth Timeline Comes Together](/content/learn-more/how-a-picnichealth-timeline-comes-together/index.html): PicnicHealth creates an easy-to-use, secure timeline of all of your medical records. Learn about what goes into the process of collecting your records and creating a timeline. (1,076 words)
- [How to Set Up Your Fitbit and Connect It to PicnicHealth](/content/learn-more/how-to-set-up-and-connect-your-fitbit/index.html): Learn how to set up your Fitbit, pair it with the Fitbit app, and securely connect it to your PicnicHealth account for research participation. (1,049 words)
- [How to Find Medications in Your Electronic Health Records](/content/learn-more/how-to-find-medications-in-your-electronic-health-records.html): Learn where to find medications in your electronic health records (EHRs) and electronic medical records (EMRs). (1,375 words)
- [‘I Was Raised Reading Food Labels’](/content/learn-more/i-was-raised-reading-food-labels/index.html): I'm beginning to understand a lot of the things that are going on with my body and things that I can do to have at least a little bit of agency. (781 words)
- [PicnicHealth | How to Advocate for Your Child with Achondroplasia in a Medical Setting](/content/learn-more/how-to-advocate-for-your-child-with-achondroplasia-in-a-medical-setting.html): Navigating the complex medical landscape is an imposing journey, and it becomes even more challenging when your child is diagnosed with a rare condition like Achondroplasia. (1,138 words)
- [How Far Are Rare Patients Going for Care?](/content/learn-more/how-far-are-rare-patients-going-for-care/index.html): Read the results of our Distance to Care survey for patients with lysosomal storage disorders. (1,203 words)
- [Access your medical records & help IBD research – Here’s how](/content/learn-more/how-you-can-see-all-your-medical-records-and-support-ibd-research-at-the-same-time.html): Noga Leviner founded PicnicHealth after managing a Crohn's disease diagnosis to give patients more control navigating their own care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care. (1,282 words)
- [How Myositis Support and Understanding Association Adapts and Stays Nimble](/content/learn-more/how-myositis-support-and-understanding-association-adapts-and-stays-nimble.html): Myositis Support and Understanding Association provides patients and caregivers the platforms, programs and resources they need to thrive while living with a chronic and debilitating rare disease. (1,391 words)
- [How to Find a Culturally Competent Provider](/content/learn-more/how-to-find-a-culturally-competent-provider/index.html): Seeking care for a rare condition, which often means having few options to begin with, can make this even more challenging. (1,002 words)
- [How Kim’s Parental Intuition Helped Her Son James Get Diagnosed](/content/learn-more/how-kims-parental-intuition-helped-her-son-james-get-diagnosed.html): Kim’s son James began experiencing strange symptoms while away at college. The mystery condition began taking over his life, and eventually Kim tracked down what was happening: Wilson disease. (1,468 words)
- [How Larry Is Honoring His Wife Rachel](/content/learn-more/how-larry-is-honoring-his-wife-rachel/index.html): “I miss her so much but know she is in a better place eating cookies, talking walks, playing piano and playing Cribbage and Yahtzee with her dad,” says Larry, whose wife Rachel passed away due to complications of PSP. (1,421 words)
- [From Italy to Holland, One Step at a Time](/content/learn-more/from-italy-to-holland-one-step-at-a-time/index.html): Our world had turned upside down, our ground had shifted below us, and we were trying to grasp at anything to hold on to. (1,716 words)
- [How Novel Therapies are Impacting Hemophilia A and B](/content/learn-more/how-novel-therapies-are-impacting-hemophilia-a-and-b.html): As a bleeding disorder, Hemophilia has the potential to create some serious problems for the patients that live with it every single day. Without the ability to properly clot your blood, it can be difficult to take many risks that could lead to excessive bleeding. Plus, this bleeding can occur internally at just about any time. This can significantly lower the patient’s overall quality of life, but there is a chance that it doesn’t have to be that way. (1,081 words)
- [I Freaking Love Selfies](/content/learn-more/i-freaking-love-selfies/index.html): To me, they mean self-confidence, loving my disabled body fully and unapologetically taking up space. (706 words)
- [How Mike Overcomes His Own MS Challenge](/content/learn-more/how-mike-overcomes-his-own-ms-challenge/index.html): Hear the story of a real PicnicHealth user, Mike, and how PicnicHealth helps him manage his medical care with multiple sclerosis (MS) and keep track of his medical records. (1,157 words)
- [How PicnicHealth is pioneering research in lupus with real-world data](/content/learn-more/how-picnichealth-is-pioneering-research-in-lupus-with-real-world-data.html): PicnicHealth gives people with lupus more control navigating their medical care. PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. And with PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care. (1,260 words)
- [How the Rare Disease Community Is Adapting to COVID-19 Restrictions](/content/learn-more/how-the-rare-disease-community-is-adapting-to-covid-19-restrictions.html): People impacted by rare conditions already know what it’s like to make big adjustments for health reasons. Here's how three members of the rare disease community are using their unique perspectives to meet the challenges of COVID-19. (1,216 words)
- [How to Get Your Immunization Records](/content/learn-more/how-to-get-your-immunization-records/index.html): Learn where to find your immunization records from your medical records and how you can get them to keep track of your vaccinations and immunizations. (717 words)
- [How is PicnicHealth different from my patient portal?](/content/learn-more/how-is-picnichealth-different-from-my-patient-portal.html): PicnicHealth does even more than a typical patient portal; it consolidates medical records from multiple sources, offering easy access and participation in real-world data research. (1,197 words)
- [How to Find In-Home Care](/content/learn-more/how-to-find-in-home-care/index.html): Caring for a loved one diagnosed with Alzheimer's can be overwhelming. However, in-home care can provide patients with a safe and comfortable environment and allow them to retain some degree of independence. (954 words)
- [How breast cancer research studies can help your family with early detection](/content/learn-more/how-breast-cancer-research-studies-can-help-your-family-with-early-detection.html): Early detection of breast cancer can make all the difference in terms of treatment options and outcomes. In addition to regular self-exams and OBGYN appointments, having a complete picture of your family history is one of the best tools you have at your disposal. (1,418 words)
- [How to recognize and manage caregiver stress](/content/learn-more/how-to-recognize-and-manage-caregiver-stress/index.html): We’ve taken our commitment to the Alzheimer’s caregiver community one step further as a Proud Supporter of the Alzheimer’s Association! Below, you’ll find a free, downloadable guide to help recognize and manage caregiver stress. (627 words)
- [For Me, CN1 Meant a Liver Transplant — and Learning to Sleep Without Phototherapy Lights](/content/learn-more/for-me-cn1-meant-a-liver-transplant-and-learning-to-sleep-without-phototherapy-lights.html): These days, I'm managing a liver transplant rather than CN1. (1,444 words)
- [Going From ‘Crigler-Najjar Kid’ to Post-Transplant Adult](/content/learn-more/going-from-crigler-kid-to-post-transplant-adult/index.html): I’m traveling new paths, navigating the intersections of my past and present selves. (1,283 words)
- [Growing Up Rare: How Keeping Hannah’s Diagnosis Quiet Affected Her Mental Health](/content/learn-more/growing-up-rare-how-keeping-hannahs-diagnosis-quiet-affected-her-mental-health.html): Hannah’s family was secretive about her condition and didn’t tell her all the ways it was affecting her health. As an adult, she advocates for mental health support. (1,370 words)
- [How Randy Found a New Purpose](/content/learn-more/how-randy-found-a-new-purpose/index.html): Once devoted to his job, he is now devoted to supporting others with myositis. (634 words)
- [MLD Led This Family to Raise Awareness on TIkTok](/content/learn-more/how-tiktok-can-raise-awareness-for-mld/index.html): When we ask Gabby, “You want to do a TikTok?” she smiles and gets happy. (682 words)
- [How a Sore Throat Led to Elizabeth’s GLA Diagnosis](/content/learn-more/how-a-sore-throat-led-to-elizabeths-gla-diagnosis/index.html): When Elizabeth went to a doctor to treat her sore throat, she discovered that it was actually a symptom of a rare disease she’d unknowingly been living with her whole life. (1,352 words)
- [How Leeya’s GLA Diagnosis Tested Friendships and Led to a Passion for Advocacy](/content/learn-more/how-leeyas-gla-diagnosis-tested-friendships-and-led-to-a-passion-for-advocacy.html): Leeya explains how a difficult time in her life allowed her to realize who her true friends are — and steered her toward advocating for the rare disease community on social media. (964 words)
- [How a Mother of Three Manages Sickle Cell](/content/learn-more/how-a-mother-of-three-manages-sickle-cell/index.html): Hear the story of a real PicnicHealth user, Mapillar, and how PicnicHealth helps her manage medical care for her three children with sickle cell disease (SCD) and keep track of medical records. (1,148 words)
- [How HD Medical Data Impacts Ongoing Research](/content/learn-more/how-hd-medical-data-impacts-ongoing-research/index.html): Huntington’s disease is a rare inherited disease that causes the progressive breakdown of nerve cells in the brain. No current treatments can alter the course of HD, which is why it’s so important to study the causes and early symptoms of the disease. This can lead to potentially preventing or helping to treat the disease for a better quality of life. Our aim is to help provide data necessary for the researchers in this field to do just that. (1,126 words)
- [How PicnicHealth studies differ from typical clinical trials](/content/learn-more/how-is-picnichealth-different-than-a-clinical-trial.html): PicnicHealth studies are the easiest way to participate in medical research. Unlike clinical trials, patients can participate from anywhere and on their own time. (942 words)
- [How Having a Child With a Rare Disease Changed Danielle’s Teaching Style](/content/learn-more/how-having-a-child-with-a-rare-disease-changed-danielles-teaching-style.html): Doctors initially thought Julian had cerebral palsy, but after genetic testing, he was eventually diagnosed with Lesch-Nyhan disease. Now, his mother brings what she's learned from this experience into the classroom. (1,139 words)
- [‘Hi, I’m Ken With AMN’](/content/learn-more/hi-im-ken-with-amn/index.html): Listen to our audio conversation with a YouTuber impacted by ALD, or adrenoleukodystrophy. (853 words)
- [How My PROS Condition Has Affected My Social Life](/content/learn-more/how-i-stopped-being-embarrassed-and-started-deepening-my-friendships.html): Because I have Klippel-Trenaunay syndrome, maintaining a social life can be hard. But I’ve learned that concealing parts of myself is even harder. (909 words)
- [‘Hi, My Mom Has PSP’](/content/learn-more/hi-my-mom-has-psp/index.html): Listen to Sylvia and Mubina explain how they bonded for life over caring for their mothers, who both had the rare disease progressive supranuclear palsy. (985 words)
- [How Crohn's Disease Drove this Rational Person to Fringedom and Back](/content/learn-more/how-crohns-disease-drove-this-rational-person-to-fringedom-and-back.html): Hear about how Noga Leviner, Co-Founder and CEO of PicnicHealth, has managed Crohn's disease. She founded PicnicHealth to have a better way to manager her medical records and care. (877 words)
- [Not Found](/content/blog-category/community-stores/index.html) (33 words)
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- [Empowering Patients with AI-Driven Access to Medical Records](/content/learn-more/how-ai-is-revolutionizing-health-tech/index.html): With PicnicHealth, AI technology allows patients to easily access their complete medical records, empowering them to make informed healthcare decisions. (766 words)
- [Guidelines on Sickle Cell Disease Treatments](/content/learn-more/guidelines-on-sickle-cell-disease-treatments/index.html): Learn about common guidelines for managing sickle cell disease. (590 words)
- [Having IBM Taught Me to Live Day by Day](/content/learn-more/having-ibm-taught-me-to-live-day-by-day/index.html): You have to do what you can while you can because in the future it’s going to be more difficult. (1,067 words)
- [
      PicnicHealth — Your Medical Record Concierge
    ](/content/demo/research/index.html): PicnicHealth gives you secure online access to your health records. We request records, create a clear medical timeline, and keep your doctors informed. (105 words)
- [
      PicnicHealth — Your Medical Record Concierge
    ](/content/demo/medical-records/index.html): PicnicHealth gives you secure online access to your health records. We request records, create a clear medical timeline, and keep your doctors informed. (99 words)
- [
      PicnicHealth — Your Medical Record Concierge
    ](/content/app/onboard/account/get-started/index.html): PicnicHealth gives you secure online access to your health records. We request records, create a clear medical timeline, and keep your doctors informed. (18 words)
- [5 Alzheimer's Content Creators You Need to Follow](/content/learn-more/alz-content-creator/index.html): Managing an Alzheimer's diagnosis, whether it's yours or that of a loved one, can feel incredibly overwhelming, isolating, and just plain difficult. These five content creators share their real experiences, tips, and resources with Alzheimer's. (376 words)
- [Not Found](/content/blog/progressive-supranuclear-palsy-story/index.html) (33 words)
- [PicnicHealth | Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition](/content/learn-more/tips-for-preparing-for-a-doctors-appointment-when-you-have-a-rare-condition.html): People with rare diseases, and their families, often feel like they are the experts in the room when meeting with a doctor who is not specialized in their condition. They may find themselves educating medical professionals about the condition – and many have even experienced a doctor Googling their rare disease during an appointment. This exchange can be particularly stressful when someone is seeking symptom relief. (1,257 words)
- [Rare Disease Day 2022: Rare Snapshots](/content/learn-more/when-every-day-is-rare-disease-day/index.html): The #RareSnapshots that drive our work all year round. (1,258 words)
- [Virtual Assessment User Guide](/content/learn-more/virtual-research-assessment-user-guide/index.html): Participating in a virtual research assessment allows you to contribute to important research from the comfort of your home. Your time and effort help advance understanding of CIDP while providing you with valuable insights into your health. (1,416 words)
- [When Your Child’s Experience Can Help Someone Else](/content/learn-more/when-your-childs-experience-can-help-someone-else/index.html): Danielle and Michelle of Love Never Sinks discuss how information gathered from the previous generation of children with Lesch-Nyhan syndrome is helping families today. (2,020 words)
- [What I Wish I Knew About Medical Records](/content/learn-more/wish-medical-records/index.html): ‍Caregiving for a loved one with Alzheimer’s is a difficult journey that millions of individuals in the United States are forced to tackle. Part of that caregiver journey usually includes managing your loved one’s medical care, including their medical history, prescriptions, and more. Having access to your loved one’s medical records is critical in being able to advocate for your loved one and manage their care. ‍Jennifer Fink, who is caring for her mother with Alzheimer’s, shares her struggles with accessing medical records and how having them would have made a difference in her mother’s care. (1,785 words)
- [blog-category/community-stories/index.html](/content/blog-category/community-stories/index.html) (1,189 words)
- [PicnicHealth | Why You're Never 'Done' Even After Breast Cancer Treatment](/content/learn-more/why-youre-never-done-even-after-breast-cancer-treatment.html): Why You're Never 'Done' Even After Breast Cancer Treatment (1,907 words)
- [What Boldness Means to Me](/content/learn-more/what-boldness-means-to-me/index.html): My experience with Leigh syndrome has opened my eyes to how many people are impacted by rare disease — and what we can do about it. (1,556 words)
- [Transcript: ‘Hi, My Mom Has PSP’](/content/learn-more/transcript-hi-my-mom-has-psp/index.html): Read the full transcript of a recorded conversation between Sylvia and Mubina, whose mothers had the same rare disease. (2,423 words)
- [blog-category/disease-management/index.html](/content/blog-category/disease-management/index.html) (861 words)
- [blog-category/medical-research/index.html](/content/blog-category/medical-research/index.html) (679 words)
- [When Children Become the Caregivers](/content/learn-more/when-children-become-the-caregivers/index.html): In his own words, Brandon writes about how he and his sister began caring for his mom, a former oncology nurse, when they were still entering adulthood themselves. (1,631 words)
- [‘Why Not Try to Live a Little?’](/content/learn-more/why-not-try-to-live-a-little/index.html): Community builder Ade Adeyokunnu refuses to let sickle cell keep him from living. (1,160 words)
- [Together, We Are a Force](/content/learn-more/together-we-are-a-force/index.html): In her own words, Kristen shares her CCM3 syndrome journey and what she's learned about the rare disease community. (2,365 words)
- [What Is a Research Consent?](/content/learn-more/what-is-a-research-consent/index.html): And how does it help put you in control of your information? (1,220 words)
- [Why Is Drug Development for Rare Diseases So Challenging?](/content/learn-more/why-is-drug-development-for-rare-diseases-so-challenging.html): Drug development's existing challenges can be even more complex for rare conditions. (1,258 words)
- [PicnicHealth Explains: What is a Personal Health Record?](/content/learn-more/what-is-a-personal-health-record/index.html): Learn about personal health records (PHRs), including different types, like standalone PHRs and tethered or connected PHRs. (1,453 words)
- [PicnicHealth | When People Point and Stare](/content/learn-more/when-people-point-and-stare/index.html): When you are born with a rare medical condition, you are faced with endless appointments with various doctors trying to help with the physical nature of your condition. However, I’ve found that doctors rarely seem to mention the psychological effect of what living with a rare condition can bring — especially if your condition makes you look visually different from the average person. (1,510 words)
- [New at PicnicHealth: AI assistant, issue flagging, caregiver appreciation and more!](/content/learn-more/product-update-dec24/index.html): Check our our latest features including our new AI assistant to help you understand your medical records. (1,417 words)
- [When a Rare Disease Threatens Your Livelihood — and Your Life](/content/learn-more/when-a-rare-disease-threatens-your-livelihood-and-your-life.html): Little did I know that my inability to swallow was the beginning of a myasthenic crisis that would threaten my life, realign our world and keep me hospitalized for nearly seven weeks. (1,201 words)
- [What’s Really Important in Life](/content/learn-more/whats-really-important-in-life/index.html): After my daughter was diagnosed with MELAS and Leigh syndrome, our family decided to embrace doing fun activities and taking pictures to remember it all. (1,525 words)
- [Why PicnicHealth is using real-world data for a new kind of research in Sickle Cell](/content/learn-more/why-picnichealth-is-using-real-world-data-for-a-new-kind-of-research-in-sickle-cell.html): PicnicHealth is working on new research that uses data from medical records to better understand the day-to-day challenges of living with sickle cell. And we're looking for volunteers with sickle cell disease to help. (1,413 words)
- [blog-category/medical-records/index.html](/content/blog-category/medical-records/index.html) (173 words)
- [What I Want People to Understand About Having Morquio A](/content/learn-more/what-i-want-people-to-understand-about-having-morquio-a.html): “There are times when it’s not fun, but there are benefits you’ll see once you accept the diagnosis and begin to meet others.” (1,426 words)
- [What Kristen Learned After Her Son Sam Was Diagnosed With GM2](/content/learn-more/what-kristen-learned-after-her-son-sam-was-diagnosed-with-gm2.html): When Kristen describes infantile Tay-Sachs disease to her friends, she tells them to imagine Alzheimer’s or dementia in a baby. (1,493 words)
- [PicnicHealth | When You're the Youngest Breast Cancer Patient Your Doctor's Ever Seen](/content/learn-more/when-youre-the-youngest-breast-cancer-patient-your-doctors-ever-seen.html): I strongly believe that age is just a number.There was a point in my cancer journey when I bargained with God. I asked him why he allowed me to get diagnosed in my twenties and wished he could have changed the timing to at least my forties or fifties. I hated the fact that I got diagnosed in my twenties, and I had a hard time letting it go. (852 words)
- [Who Owns Your Electronic Medical Records? PicnicHealth Explains](/content/learn-more/who-owns-your-electronic-medical-records/index.html): Learn what is an electronic medical records and who owns your medical records. (1,030 words)
- [What Happened When Kasey Joined Forces With Other Parents](/content/learn-more/what-happened-when-kasey-joined-forces-with-other-parents.html): Ever since her son, Will, was diagnosed with SURF1-associated Leigh syndrome, Kasey has gone to great lengths to drive forward research not only for his disease, but for other rare diseases as well. (1,279 words)
- [What It’s Like to Live With a ‘Children’s Disease’ at 38](/content/learn-more/what-its-like-to-live-with-a-childrens-disease-at-38.html): Barry is a gregarious, outgoing jokester. He’s also leading the charge for adult GM2 research. (1,149 words)
- [Whole Exome Sequencing Gave This Family a Diagnosis That Changed Their Whole Perspective](/content/learn-more/whole-exome-sequencing-gave-this-family-a-diagnosis-that-changed-their-whole-perspective.html): When McKenzie’s daughter, Mia, was diagnosed with Leigh syndrome, McKenzie blamed herself for it. “Because it’s inherited,” she explains, “you get that feeling that you contributed in some way.” (1,326 words)
- [What Is Newborn Screening and Why Is It Important?](/content/learn-more/what-is-newborn-screening-and-why-is-it-important/index.html): For many rare diseases, early diagnosis and treatment is crucial. (909 words)
- [What’s the Difference Between a 504 and an IEP?](/content/learn-more/whats-the-difference-between-a-504-and-an-iep/index.html): Some basic information for anyone with 504s or IEPs on their mind this back-to-school season. (936 words)
- [‘You Have to Stay Positive — But You’ve Got to Get to That Point First.’](/content/learn-more/you-have-to-stay-positive-but-youve-got-to-get-to-that-point-first.html): Blaine has fully embraced the community that helped him through the early years of his diagnosis with IBM, a rare muscle disease. (1,025 words)
- [Raising Awareness for Rare: One Day at a Time](/content/learn-more/raising-awareness-for-rare-one-day-at-a-time/index.html): Awareness days, weeks or even months are opportunities to rally a community and raise funding to advance the mission of nonprofit organizations that serve individuals living with a rare disease and their families. (1,893 words)
- [What Charles Has Learned From the CCM3 Community](/content/learn-more/what-charles-has-learned-from-the-ccm3-community/index.html): “Gratitude for what we have today (however flawed by symptoms) is always preferable to wasting your emotional strength on lamenting a loss of function." (1,457 words)
- [What It Takes to Develop A Coronavirus Vaccine](/content/learn-more/what-it-takes-to-develop-a-coronavirus-vaccine/index.html): Learn about what it takes to develop a coronavirus vaccine. Coronavirus causes a disease known as COVID-19. There are a number of biotech companies working to develop a vaccine, including Moderna, Gilead, and more. However, the clinical trial process to ensure safety and effectiveness means that a vaccine likely wouldn't be able for 12 to 18 months at the earliest. (1,139 words)
- [One family's fabry diagnosis journey](/content/learn-more/what-fabry-disease-taught-my-family-about-mental-health.html): The issues with support for young people and for anyone with a rare disease are clear. When help is needed it is usually needed immediately. (1,317 words)
- [We Don’t Want Other Parents to Feel the Same Pain](/content/learn-more/we-dont-want-other-parents-to-feel-the-same-pain/index.html): Families who have felt the devastation of MLD want to help, and participating in research is one way to do that. (1,793 words)
- [Mandy Sellars on Living With PROS and People Reacting to Her Physical Differences](/content/learn-more/when-people-point-and-stare-d0721/index.html): There’s no perfect way to handle people’s reactions to physical differences, but over the years I’ve developed a few techniques. (1,214 words)
- [The Top Kidney Disease Content Creators for IgAN Patients](/content/learn-more/top-kidney-disease-content-creators/index.html): Looking for kidney disease content creators to follow for support and information? Check out our list of top creators for IgAN patients, who are empowering the kidney community and sharing their experiences. (544 words)
- [What research is being done to find a cure for MS?](/content/learn-more/what-research-is-being-done-to-find-a-cure-for-ms/index.html): Learn about research that's being done to find new treatments for multiple sclerosis (MS), including drugs like ocrelizumab, fingolimod, and glatiramer acetate. (607 words)
- [The Latest Medical Research to Find Treatments and Cures for Hemophilia](/content/learn-more/the-latest-medical-research-to-find-treatments-and-cures-for-hemophilia.html): Learn about the latest research into new treatments for hemophilia, including several promising new drugs that are in clinical trials. (2,001 words)
- [Understanding IgAN Diagnosis: Symptoms, Tests, and Treatment](/content/learn-more/understanding-your-igan-diagnosis-guide/index.html): Are you or a loved one struggling with IgAN? Learn about key symptoms, tests, kidney biopsy overview, stages, diet, and treatment options in this comprehensive guide to help you understand and manage your diagnosis. (1,437 words)
- [What Does ‘Care Team’ Mean to You?](/content/learn-more/what-does-care-team-mean-to-you/index.html): Four members of the rare disease community describe their experiences with coordinated health care. (1,267 words)
- [blog-category/artificial-intelligence/index.html](/content/blog-category/artificial-intelligence/index.html) (102 words)
- [blog-category/life-at-picnichealth/index.html](/content/blog-category/life-at-picnichealth/index.html) (177 words)
- [What I Realized After My Son Ezra Was Diagnosed With IRF2BPL](/content/learn-more/what-i-realized-after-my-son-ezra-was-diagnosed-with-irf2bpl.html): Talking to other parents in the IRF2BPL community might not immediately change our situation, but it does validate our family’s experience with this ultra rare condition. (1,188 words)
- [What Is a Natural History Study, and Why Is It Important?](/content/learn-more/what-is-a-natural-history-study-and-why-is-it-important.html): The goal of a natural history study is to get a big picture view of how a disease develops and improve understanding of that condition. AllStripes can help organizations create high-quality natural history studies of rare conditions — which can feed research for years to come. (879 words)
- [Tracing the Underrepresentation of Black Physicians in America](/content/learn-more/tracing-the-underrepresentation-of-black-physicians-in-america.html): Years of systemic racism have prohibited or limited the ability of many Black individuals from obtaining a medical education. For Black patients and families impacted by rare disease, seeking health care professionals who are also Black can be uniquely challenging. (1,305 words)
- [blog-category/study-support/index.html](/content/blog-category/study-support/index.html) (197 words)
- [blog-category/product-updates/index.html](/content/blog-category/product-updates/index.html) (201 words)
- [‘We Didn’t Know What Was Happening to Her’](/content/learn-more/we-didnt-know-what-was-happening-to-her/index.html): Julie’s daughter Amber, who has Kleefstra syndrome, went through a period of regression that stumped her doctors. (1,368 words)
- [PicnicHealth’s Gillian Hanson Aids Bleeding Disorder Patients](/content/learn-more/picnichealths-gillian-hanson-pays-it-forward-to-the-bleeding-disorder-community.html): PicnicHealth doctor and founding team member Gillian Hanson uses her own experience as a patient to help the hemophilia community and other disease communities for PicnicHealth. (2,264 words)
- [What Is Classical CAH? Symptoms, Causes, Diagnosis, and Treatment](/content/learn-more/what-is-classical-cah/index.html): Learn what classical congenital adrenal hyperplasia (CAH) is, including causes, symptoms at birth, diagnosis through newborn screening, treatment options, and the difference between classical and non-classical CAH. (704 words)
- [Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition](/content/learn-more/tips-for-preparing-for-a-doctors-appointment-when-you-have-a-rare-condition-7867f.html): When you're impacted by a rare disease, preparing for a doctor's appointment can be a process. Five AllStripes ambassadors shared their top tips. (1,677 words)
- [Webinar: PicnicHealth's PNH Research Study](/content/learn-more/webinar-picnichealth-pnh-research-study/index.html): Thank you for joining us for Caregiver Tips for Alzheimer’s in partnership with Donna Marentay of New Dawn Dementia Understandings! Click the links below to view the webinar recording and Donna’s handouts. (930 words)
- [blog-category/perspectives/index.html](/content/blog-category/perspectives/index.html) (71 words)
- [blog-category/company-updates/index.html](/content/blog-category/company-updates/index.html) (79 words)
- [We Were Asking Questions Nobody Could Answer](/content/learn-more/we-were-asking-questions-nobody-could-answer/index.html): Those first few hours were tough; we were asking questions nobody could answer because MMA is rare. (914 words)
- [Study Guide for Remote Visits | PicnicHealth](/content/learn-more/remote-visit-user-guide-sle/index.html): Participating in a remote study visit through a simple video call allows you to contribute to important research from the comfort of your home. Your time and effort help advance understanding of lupus. (1,595 words)
- [These Parents Took a Gamble to Save Their Son’s Hearing From a Rare Disease](/content/learn-more/these-parents-took-a-gamble-to-save-their-sons-hearing-from-a-rare-disease.html): Lara and Ron have had to make tough decisions in the fight against their son’s rare disease, including whether to undergo a potentially risky brain surgery. (1,187 words)
- [The Power of Hashtags](/content/learn-more/the-power-of-hashtags/index.html): After my son Lincoln was diagnosed, I started connecting with others all over the world about their PROS journeys. (1,947 words)
- [The Future of Sickle Cell Care](/content/learn-more/the-future-of-sickle-cell-care/index.html): I believe that advocates are quintessential parts of the ecosystem for change because they inform lawmakers and health leaders of outdated policies and healthcare priorities. (1,367 words)
- [This Mom With CIDP Is Fighting for Answers](/content/learn-more/this-mom-with-cidp-is-fighting-for-answers/index.html): Carrie Szeles was told many times “you’re crazy” for thinking something was seriously wrong with her health. Now, she’s often told she doesn’t “look sick.” Through it all, she had to learn to be her own advocate and strongest supporter. (1,568 words)
- [This Mom Is Fighting for Answers After Losing Two of Her Children to a Rare Disease](/content/learn-more/this-mom-is-fighting-for-answers-after-losing-two-of-her-children-to-a-rare-disease.html): Deborah is determined to help other families impacted by GM1 gangliosidosis to honor her sons, Luke and Isaiah. (1,385 words)
- [Ulcerative Colitis Diets: Is this Safe to Eat?](/content/learn-more/ulcerative-colitis-diets-is-this-safe-to-eat/index.html): What is safe to eat when you have ulcerative colitis? Learn about what foods to avoid to help in managing ulcerative colitis and other inflammatory bowel diseases. (618 words)
- [The Benefits of Electronic Health Records (EHRs)](/content/learn-more/the-benefits-of-electronic-health-records-ehrs/index.html): Learn about the benefits of electronic health records (EHRs) and how they can make the medical system more efficient and provide better care for patients. (1,309 words)
- [ARIES Study | PicnicHealth](/content/make-an-impact/aries/index.html): Join the ARIES Study for Friedreich's ataxia research from home. Contribute medical records, complete surveys, and get compensated. No extra visits required. (1,886 words)
- [Designing Trials for Families: A Rare Disease Caregiver's Perspective](/content/learn-more/rare-disease-caregiver-and-researchers-perspective/index.html): PicnicHealth's Lindsey Wahlstrom shares her daughter’s rare disease journey, the realities of caregiving, and what informed consent must look like for families. (1,963 words)
- [This Mom of a 7-year-old With Hunter Syndrome Is Fighting for Her Family](/content/learn-more/this-mom-of-a-7-year-old-with-hunter-syndrome-is-fighting-for-her-family.html): Ashly built her career as a speech therapist helping children with complex needs. Now, she’s advocating for her own child — and generations of her family to come. (1,150 words)
- [To Honor Her Sons’ Legacies, This Mom Dedicated Her Life to Helping Others](/content/learn-more/to-honor-her-sons-legacies-this-mom-dedicated-her-life-to-helping-others.html): Michelle lost both of her sons to a rare condition called Lesch-Nyhan disease. Almost a decade later, she remains a leader in the Lesch-Nyhan community and works tirelessly to support caregivers and patients. (1,381 words)
- [PicnicHealth community voices: what you need to know about joining clinical studies](/content/learn-more/top-research-tips-from-a-medical-professional-and-picnichealth-study-participant.html): PicnicHealth community voices: what you need to know about joining clinical studies (937 words)
- [PicnicHealth Gives Back This Holiday Season 2022](/content/learn-more/picnichealth-gives-back-this-holiday-season-2022/index.html): PicnicHealth Gives Back has returned for another year! Every time a patient contributes to a PicnicHealth research study, PicnicHealth will donate to a patient advocacy group until December 31, 2022. (1,055 words)
- [Smart Insoles User Guide](/content/learn-more/smart-insoles-user-guide/index.html): We’ve partnered with Celestra Health to advance CIDP research using innovative technology. By wearing your smart insoles for just 15 minutes of walking, you’ll help advance understanding and improve treatment options for CIDP. (1,182 words)
- [Your IgAN Lab Values: A Comprehensive Guide](/content/learn-more/understanding-your-igan-labs/index.html): As an IgAN patient, understanding your lab values is crucial to managing your condition. Learn about key measurements, monitoring creatinine levels, recognizing flare-up symptoms, lifestyle changes, diet, and new treatments in this comprehensive guide. (619 words)
- [Quinn Finds Joy in Everything](/content/learn-more/quinn-finds-joy-in-everything/index.html): Every milestone is so much bigger to us because he does things we thought alpha-mannosidosis might not ever allow him to do. (1,581 words)
- [The Truth About Growing Up With Fabry Disease](/content/learn-more/the-truth-about-growing-up-with-fabry-disease/index.html): I am just trying to be as honest as possible... Growing up having this disease has been pretty rough. (1,099 words)
- [There’s a New Superhero in Town](/content/learn-more/theres-a-new-superhero-in-town/index.html): Rhonda created Myositis Warrior as a fresh way to raise awareness for inclusion-body myositis, known as IBM, and other rare diseases. (1,476 words)
- [‘The Road Ahead Is Going to Be Difficult, But You Are Equipped for It’](/content/learn-more/the-road-ahead-is-going-to-be-difficult-but-you-are-equipped-for-it.html): Lindsey’s journey with her rare condition has evolved, and so has her ability to fiercely advocate for her needs as a patient and person. (1,415 words)
- [Photos Not Taken: A Video Series on Living With Sickle Cell Disease](/content/learn-more/photos-not-taken-a-video-series-on-living-with-sickle-cell-disease.html): The artist Bukky Adeyokunnu explains their photography’s relationship to living with sickle cell, in two videos set 9 years apart. (1,438 words)
- [Scott Isn’t Going to Let His IBM Diagnosis Define Him](/content/learn-more/scott-isnt-going-to-let-his-ibm-diagnosis-define-him.html): Scott was diagnosed with IBM four years ago, but works hard to keep doing the things he enjoyed before. (1,433 words)
- [The Most Important Thing I’ve Learned Since My Daughter Was Diagnosed With Kabuki Syndrome](/content/learn-more/the-most-important-thing-ive-learned-since-my-daughter-was-diagnosed-with-kabuki-syndrome.html): Life with Roya means our family has to just let go a little bit and be in the present. (1,128 words)
- [The Latest Medical Research to Find Treatments and Cures for PNH](/content/learn-more/the-latest-medical-research-to-find-treatments-and-cures-for-pnh.html): Learn about the latest research into new treatments for paroxysmal nocturnal hemoglobinuria (PNH), including promising new drugs that have recently been approved by the FDA or are in clinical trials. (949 words)
- [These Parents Raised $3 Million to Jumpstart Research on Their Daughter’s Rare Disease](/content/learn-more/these-parents-raised-3-million-to-jumpstart-research-on-their-daughters-rare-disease.html): After their daughter Iris was diagnosed with the rare disease GM1, Douglas and Christine decided to find answers by forging their own path. (1,344 words)
- [Finding a New ‘Normal’](/content/learn-more/finding-a-new-normal/index.html): Having dermatomyositis is life-changing, and you never know what your new normal is going to be. (1,868 words)
- [These Partners On and Off the Dance Floor Are Pushing for PSP Research Together](/content/learn-more/these-partners-on-and-off-the-dance-floor-are-pushing-for-psp-research-together.html): Diane and Wayne used to be ballroom dancers. Now, Diane doesn’t have the muscle control or balance to dance. (1,337 words)
- [‘There Really Isn’t Anyone Else Who Understands’](/content/learn-more/there-really-isnt-anyone-else-who-understands/index.html): Gary was diagnosed with PSP, a rare disease that often presents with symptoms similar to Parkinson’s disease. He’s struggled with the condition, but also the feelings of isolation and frustration that accompany it. (832 words)
- [An Introduction to Electronic Health Records](/content/learn-more/an-introduction-to-electronic-health-records/index.html): Get an overview on electronic health records (EHRs) and what is contained in your EHRs. (1,455 words)
- [Tim’s Rare Disease Journal Is Helping Thousands of People Find Hope](/content/learn-more/tims-rare-disease-journal-is-helping-thousands-of-people-find-hope.html): One wrong click of the mouse led to Tim unknowingly publishing his online journal about progressive supranuclear palsy for all the world to see. He never could've imagined what happened next. (973 words)
- [The Many Forms of Grief](/content/learn-more/the-many-forms-of-grief/index.html): This week, we’re exploring just a few of grief’s many forms. (990 words)
- [Timeline of Records Brings Peace of Mind](/content/learn-more/timeline-of-records-brings-peace-of-mind/index.html): Hear the story of a real PicnicHealth user, John, and how PicnicHealth helps him manage his medical care and keep track of his medical records. (1,058 words)
- [Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community](/content/learn-more/stephen-started-a-facebook-group-to-bring-positivity-to-the-myasthenia-gravis-community.html): Stephen first began experiencing symptoms of myasthenia gravis when he noticed his vision was blurred while driving home from work. (1,123 words)
- [This Holiday Season, Talk About Your Family Health History](/content/learn-more/this-holiday-season-talk-about-your-family-health-history.html): November 24th, 2022 is National Family Health History Day (also known as National Family History Day) — a day to raise awareness of familial health. (1,114 words)
- [The Difference Between EHRs and EMRs](/content/learn-more/the-difference-between-ehrs-and-emrs/index.html): PicnicHealth explains what electronic health records and electronic medical records are, including the differences between EHRs vs EMRs. (1,636 words)
- [‘No One Could Figure Out What Was Wrong’](/content/learn-more/no-one-could-figure-out-what-was-wrong/index.html): After Alexis began experiencing eye pain, a doctor predicted she had a long diagnostic journey in front of her. He was right. (1,454 words)
- [Marc’s Journey with CAH: Overcoming Challenges with Strength and Support](/content/learn-more/prepared-for-the-2-percent/index.html): Marc’s story of living with CAH, facing challenges, and finding strength through support. (1,599 words)
- [New at PicnicHealth: Smart highlights, pinned imaging and more!](/content/learn-more/product-update-aug24/index.html): Check our our latest features including AI highlights and blurbs to help you understand your medical records. (1,066 words)
- [My Medical Binder, My Rare Diagnosis — and Everything After](/content/learn-more/my-medical-binder-my-rare-diagnosis-and-everything-after.html): Because of what I’ve been through as a rare patient, I’m driven to help people facing similar challenges. (1,458 words)
- [Ensuring High-Quality Data for Rare Disease Research](/content/learn-more/ensuring-high-quality-data-for-rare-disease-research.html): Once AllStripes collects your medical records, how do we use them for research? One important step is verifying the completeness and depth of the data from each participant. (1,516 words)
- [Stella's CDKL5 Diagnosis Showed Him What Life Is All About](/content/learn-more/stellas-cdkl5-diagnosis-showed-him-what-life-is-all-about.html): Joe is determined to help his family, one meal at a time. (1,350 words)
- [Webinar Transcript: Caregivers for Compromise Webinar](/content/learn-more/webinar-transcript-caregivers-for-compromise-webinar.html): All right. Thank you everybody for joining. We are so excited to chat with you and introduce you to PicnicHealth and real-world data research for Alzheimer's and dementia. So just to give you a quick rundown of how tonight will go. We'll do some brief introductions. I'll give you an overview of what PicnicHealth is. I will actually demo the timeline for you so you can see what it looks like and then Mary will share a little bit of her story and we can open it up for questions. So just a quick introduction. Hi, I'm Brittany, I'm a community partnership manager here at PicnicHealth. I work with our lovely change champions like Mary, who I'm sure we are familiar with. I am also a former care partner for my mother, who had dementia. And Mary, I'm sure we all know you, but I would love it if you would just quickly introduce yourself. (6,752 words)
- [The Legacy Mary Helped Jerry Make](/content/learn-more/the-legacy-mary-helped-jerry-make/index.html): Mary and Jerry’s lives were forever changed when Jerry was diagnosed with the rare disease PSP. The choices he's made since aim to ensure future PSP patients and caregivers don’t go through what they did. (1,074 words)
- [Webinar Transcript: Allie Schmidt, Disability Dame and PicnicHealth](/content/learn-more/webinar-transcript-allie-schmidt-disability-dame-and-picnichealth.html): Check out our latest webinar hosted by Allie Schmidt, Disability Dame and PicnicHealth (7,268 words)
- [The Kleefstra Community Helped Matt Adjust to His Family's New Reality](/content/learn-more/the-kleefstra-community-helped-matt-adjust-to-his-familys-new-reality.html): One of the best ways Matt has found to adjust to his daughter Wynne's diagnosis is by connecting with others in the Kleefstra community. (1,067 words)
- [Sarcoidosis Journey by Michael](/content/learn-more/the-coach-taking-on-sarcoidosis/index.html): Michael Patterson turned his passion for coaching football and mentoring into an effort to combat the effects of sarcoidosis. (1,126 words)
- [Our new AI assistant – and how we got here](/content/learn-more/our-new-ai-assistant/index.html): Today, we're so excited to announce the launch of our new AI assistant, a milestone that represents the next step in empowering patients with their own health data. (1,360 words)
- [Signs and Symptoms of Alzheimer's](/content/learn-more/signs-and-symptoms-of-alzheimers/index.html): PicnicHealth breaks down the critical signs and symptoms of Alzheimer's to help with early detection for improved management and care. (860 words)
- [The Latest Medical Research to Find Treatments and Cures for Lupus](/content/learn-more/the-latest-medical-research-to-find-treatments-and-cures-for-lupus.html): Learn about the latest research into new treatments for lupus, including several promising new drugs that are in clinical trials. (697 words)
- [Not Found](/content/blog/new-superhero-in-town-fighting-for-a-better-world-for-rare-disease-patients.html) (33 words)
- [Our Daughter's Batten Disease Diagnosis Made Us Determined](/content/learn-more/our-daughters-batten-disease-diagnosis-made-us-determined.html): Haley loves singing and horses, but watching little pieces of her fall away has been hard. It’s why we founded the Haley’s Heroes Foundation. (869 words)
- [The Answer to a Question James Had Been Asking for 31 Years](/content/learn-more/the-answer-to-a-question-james-had-been-asking-for-31-years.html): How making a friend in the rare-disease community led to an accurate diagnosis of PROS. (1,091 words)
- [Shaye Is Grateful That Social Media Can Connect Her With Others Impacted by HDFN](/content/learn-more/shaye-is-grateful-that-social-media-can-connect-her-with-others-impacted-by-hdfn.html): When Shaye first learned she and her baby were at risk for complications, she felt confused and devastated. Then she found others who'd been in her shoes. (1,290 words)
- [Reading My Dad's ALD-Related Medical Records Helped Me Understand Him in a New Way](/content/learn-more/now-i-understand-my-dad-in-a-way-i-never-have-before.html): Reading through my dad’s ALD-related medical records helped me paint a much clearer picture of what my family went through all those years ago. (1,463 words)
- [‘It was a patient.’](/content/learn-more/it-was-a-patient/index.html): Dr. Kimberly Chapman of Children’s National Medical Center sat down with AllStripes to discuss how she became an expert in MMA and PA and how de-identified data from medical records and the JUMP study will contribute to the MMA and PA research landscape. (1,065 words)
- [PicnicHealth Webinar: Caregiver Tips for Alzheimer’s](/content/learn-more/picnichealth-webinar-caregiver-tips-for-alzheimers/index.html): Thank you for joining us for Caregiver Tips for Alzheimer’s in partnership with Donna Marentay of New Dawn Dementia Understandings! Click the links below to view the webinar recording and Donna’s handouts. (594 words)
- [A Guide Finding a Nephrologist](/content/learn-more/finding-a-nephrologist/index.html): Learn what a nephrologist does, the tools for finding one, and understand your treatment options. Our guide will help you find the best nephrologist for your needs. (1,081 words)
- [New at PicnicHealth: In-app rewards, pins, care team updates and more!](/content/learn-more/product-update-apr24/index.html): Discover what's new at PicnicHealth! Unlock rewards, streamline care team management, track conditions with ease, and explore our latest Pins feature. (774 words)
- [She Stumbled Onto Her Father’s Diagnosis While Studying PSP in Class](/content/learn-more/she-stumbled-onto-her-fathers-diagnosis-while-studying-psp-in-class.html): Dayna’s studies as a speech pathologist helped her push for a diagnosis for her father’s neurological condition, and gave him a voice as the disease progressed. (760 words)
- [‘Even Though I’m in Remission, I’m Still Tired’](/content/learn-more/even-though-im-in-remission-im-still-tired/index.html): My interest is in remembering how afraid I was being in the hospital and not having a single person that I could talk to that understood what I was going through. That's why I've stayed connected. (1,669 words)
- [COVID-19 and the Rare Community](/content/learn-more/covid-19-and-the-rare-community/index.html): Read the results of our COVID-19 healthcare impact survey. (1,124 words)
- [PicnicHealth Rebrands as PicnicAI | Press Release](/content/learn-more/picnichealth-rebrands-as-picnicai/index.html): PicnicHealth announces its rebrand to PicnicAI, introducing two distinct product lines: PicnicResearch for sponsors and PicnicHealth for patients — built on AI that accelerates real-world health outcomes. (1,207 words)
- [What It's Like to Take Care of a Child With ALD](/content/learn-more/even-as-a-nurse-i-was-overwhelmed/index.html): I can’t imagine how parents without medical training take care of children with ALD. (1,534 words)
- [Finding Joy and Community in the Midst of a Sanfilippo Diagnosis](/content/learn-more/finding-joy-and-community-in-the-midst-of-a-sanfilippo-diagnosis.html): Elise was just weeks away from giving birth to her second daughter when she learned her five-year-old, Keira, had a rare, fatal genetic condition. (1,030 words)
- [Everything to Know About Drug Repurposing](/content/learn-more/everything-to-know-about-drug-repurposing/index.html): Only 5 percent of rare diseases have approved treatments. How could drug repurposing help? (806 words)
- [Dreams of Motherhood, Deferred](/content/learn-more/dreams-of-motherhood-deferred/index.html): As the founder of Sickle Cell Reproductive Health Education Directive, I’m fighting to end disparities and offer resources I wish I'd been able to access earlier on my infertility journey. (1,455 words)
- [Qualitative Interview User Guide](/content/learn-more/qualitative-interview-user-guide/index.html): This guide covers everything you need to prepare for your NAVIGATE-CIDP Study patient interview — from what to expect to how to join. The interview is a relaxed, one-on-one virtual conversation about your experience with Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP). It takes about 60-90 minutes, with time for breaks as needed, and you can do it by video or phone — whichever works best for you. (601 words)
- [Doctors First Thought Mindy Had Leukemia, But Her Nosebleeds Were a Sign of Something Far More Rare](/content/learn-more/doctors-first-thought-mindy-had-leukemia-but-her-nosebleeds-were-a-sign-of-something-far-more-rare.html): Mindy loves dance and gymnastics and has been a little warrior since day one. She, and her family, are managing a rare condition called ITP. (1,003 words)
- [The PicnicHealth guide to caregiving](/content/learn-more/picnichealth-guide-to-caregiving/index.html): Let’s face it: There’s a lot to manage when you embark on a caregiving journey for someone with Alzheimer’s disease. Whether you’re just starting out or you’re well along the path, there are symptoms to monitor, appointments to navigate, medications to manage, and a whole lot more. It’s easy to become overwhelmed—but a few strategic moves can go a long way toward alleviating stress and lightening your caregiver load. The following five tips can be your guide to supporting your loved one—and yourself—through the twists and turns of Alzheimer’s disease. (810 words)
- [Cure IBM: Growing Research and Awareness for the Common Muscle Disease](/content/learn-more/cure-ibm-growing-research-and-awareness-for-the-common-muscle-disease.html): Kevin Dooley founded Cure IBM in 2017 to raise awareness of inclusion body myositis (IBM) and encourage research for an effective treatment and cure. (885 words)
- [Andrea Wants People With Rare Disease to Be Treated Like Everyone Else](/content/learn-more/andrea-wants-people-with-rare-disease-to-be-treated-like-everyone-else.html): When Andrea was diagnosed with late-onset Tay-Sachs disease at 33, she didn’t know what to expect. Today, life looks different, but she still enjoys the hobbies she loves the most. (1,316 words)
- [Every Bruise Could Be Deadly for This Adventure-Lover With the Rare Condition ITP](/content/learn-more/every-bruise-could-be-deadly-for-this-adventure-lover-with-the-rare-condition-itp.html): Fred has tried medications, platelet transfusions and surgery — and remains determined to keep having important life experiences. (1,159 words)
- [Emily Wants to Show Other Caregivers the Importance of Taking Care of Yourself](/content/learn-more/emily-wants-to-show-other-caregivers-the-importance-of-taking-care-of-yourself.html): Emily was so consumed with caring for her son, who has a rare disease called Hunter syndrome, that she neglected her own well-being and faced grave consequences. Now, she's determined to help others who might be in the same boat. (1,177 words)
- [Playing Cody on ABC's 'The Good Doctor' and Representing Kabuki Syndrome on TV](/content/learn-more/playing-cody-on-abcs-the-good-doctor-and-representing-kabuki-syndrome-on-tv.html): I hope my debut TV appearance will raise awareness, encourage research and remind everyone that people with Kabuki syndrome should follow their dreams. (749 words)
- [Rare Diseases and Autism Spectrum Disorder: What You Should Know](/content/learn-more/rare-diseases-and-autism-spectrum-disorder-what-you-should-know.html): Autism is a behavioral diagnosis, so it’s possible for individuals with rare single-gene disorders to receive an autism diagnosis on top of their rare disease diagnosis. (520 words)
- [Feeling More Me](/content/learn-more/feeling-more-me/index.html): To me, having achondroplasia isn’t what makes me beautiful. It’s one part of my life. (895 words)
- [PicnicHealth | Empowering Wellness: Spotlight on Three Organizations Championing Black Mental and Physical Health](/content/learn-more/empowering-wellness-spotlight-on-three-organizations-championing-black-mental-and-physical-health.html): As we celebrate Black History Month, we recognize that Black history and the wellness of Black communities must be top of mind every day of the year. Despite the many contributions Black people have made to medicine and wellness, alarming health disparities due to structural and interpersonal racism, still exist for Black people. (973 words)
- [AAPI Heritage Month: Asian Representation and Inclusion in Research](/content/learn-more/aapi-heritage-month-asian-representation-and-inclusion-in-research.html): Although there is a large and diversified group of Asian Americans and Pacific Islanders (AAPI) in the United States, clinical trials and medical research frequently underrepresent this group. This underrepresentation result in a lack of knowledge about how particular medications and therapies affect AAPI people, potentially resulting in less effective or even hazardous medical interventions. (1,210 words)
- [Don't Panic. You're Not Alone.'](/content/learn-more/dont-panic-youre-not-alone/index.html): Nicole's daughter Olivia is living with CDKL5, a rare disease characterized by frequent seizures. She has some advice for other parents raising rare children. (1,044 words)
- [8 Highlights From the Global Genes RARE Patient Advocacy Summit](/content/learn-more/8-highlights-from-the-global-genes-rare-patient-advocacy-summit.html): A roundup of thoughtful and energetic takeaways, courtesy of our AllStripes Ambassadors. (1,389 words)
- [A Glimpse Into Linnea’s Future](/content/learn-more/a-glimpse-into-linneas-future/index.html): After Dinah’s daughter was diagnosed with CCM3, a rare condition that causes brain lesions, she went looking for clues about what might lie ahead. (1,436 words)
- [INSPIRE-D Study](/content/make-an-impact/inspire-d/index.html): Join the INSPIRE-D Study for Hereditary Angioedema (HAE) research. Participate from home, earn $120, and contribute to DAWNZERA™ effectiveness data. (2,356 words)
- [PicnicHealth | Embracing Life's Uniqueness: Lydia and Charlie’s Journey with Achondroplasia](/content/learn-more/embracing-lifes-uniqueness-lydia-and-charlies-journey-with-achondroplasia.html): In the heart of Urbana, Ohio, Lydia and her husband Charlie embarked on an unexpected journey that began with the arrival of their daughter, Dagny. Diagnosed with achondroplasia, their story is one of discovery, resilience, and unwavering love. (490 words)
- [Coronavirus Prevention Tips from a PicnicHealth Doctor](/content/learn-more/coronavirus-prevention-tips-from-a-picnichealth-doctor.html): While there’s no cure or guaranteed way to prevent catching coronavirus, there are a number of steps that you can take to reduce your risk of exposure. Hear from an infection disease prevention doctor at PicnicHealth to learn what steps you can take to slow the spread of Covid-19. (1,184 words)
- [COVID-19 and IgAN: What You Need to Know](/content/learn-more/covid19-impacts-on-individuals-with-iga-nephropathy.html): Discover COVID-19's impact on IgA nephropathy, key insights, and safety measures for kidney health. Prioritize precautions for well-being. (693 words)
- [PicnicHealth | Join the #ShareYourRare Campaign!](/content/learn-more/amplify-your-voice-join-the-shareyourrare-campaign/index.html): In honor of Rare Disease Awareness Month, we're thrilled to kick off our #ShareYourRare campaign. We believe that your stories matter, and through #ShareYourRare, we want to highlight the often-overlooked challenges and stories of those who are living with a rare condition. (1,095 words)
- [Classical CAH Symptoms by Age: Signs in Babies, Children, and Adults](/content/learn-more/classical-cah-symptoms/index.html): Learn the key symptoms of classical congenital adrenal hyperplasia (CAH), including signs in newborns, adrenal crisis warning symptoms, androgen excess, and long-term effects in children and adults. (1,192 words)
- [Lessons from
 Caring for My Mother](/content/learn-more/caring-lessons/index.html): Five years into her mother, Linda’s, mixed dementia diagnosis, Patti LaFleur made the decision to have her mother move in with her and stepped into the full-time caregiver role. A former kindergarten teacher, Patti had no prior experience as a caregiver. What she did have, however, was love and gratitude for her mother and the confidence that they would figure things out together.Patti’s raw and honest account of caring for her mother has inspired the caregiving community on social media. In addition to care tips, she’s shared her mom’s infectious laughter, their beautiful partnership, and how they’ve overcome obstacles. We sat down with Patti to learn more about her caregiving journey and the insights she has gained. (1,494 words)
- [About Alzheimer's](/content/learn-more/alzheimers-about/index.html): Alzheimer's is the most common form of Dementia and is characterized by how it impacts a human's behavior, thinking, and most importantly, memory. The symptoms can worsen over time, and the patient may have difficulty carrying out daily activities. Memory lapses, or mild memory loss, are usually one of the first signs of Alzheimer's disease and symptoms continue to worsen over time, although the rate at which the disease progresses can vary. (1,047 words)
- [Terms of Use](/content/terms-of-use/index.html) (5,699 words)
- [Bullied Because of a Rare Condition, This Dancer Is Now Redefining Beauty](/content/learn-more/bullied-because-of-a-rare-condition-this-dancer-is-now-redefining-beauty.html): Andrea was rejected for professional dance jobs because PROS caused growths to develop on her face, but she refused to let society’s standard of beauty stop her from living out her passion. (1,411 words)
- [CIDP vs. MS: Two Conditions That Are Frequently Confused — Here's the Difference](/content/learn-more/cidp-vs-ms-differences/index.html): CIDP and MS are often confused — both affect nerves and the immune system. Here's what makes them different, and why getting the right diagnosis matters. (972 words)
- [Bringing a Creative Approach to My Access Tools](/content/learn-more/bringing-a-creative-approach-to-my-access-tools/index.html): Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt to every moment. (753 words)
- [PicnicHealth | Crohn's Disease](/content/resources/diseases/crohns-disease/index.html): Everything you need to know about Crohn's disease, a form of inflammatory bowel disease, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,952 words)
- [As a Black Woman, I Felt Like My Pain Wasn’t Taken Seriously](/content/learn-more/as-a-black-woman-i-felt-like-my-pain-wasnt-taken-seriously.html): Since getting a diagnosis of Klippel-Trenaunay syndrome at 27, I’ve been able to better advocate for myself and others with my condition. (1,053 words)
- [PicnicHealth | CARES Podium Presentation](/content/learn-more/cahtalog-the-power-of-medical-records-in-research/index.html): CAHtalog: The Power of Medical Records in Research is a brief presentation that highlights the CAHtalog registry – an effort sponsored by Neurocrine and supported by CARES and PicnicHealth. (760 words)
- [A Repurposed Drug Helps Michael Do the Things He Loves, While KLA Research Continues](/content/learn-more/a-repurposed-drug-helps-michael-do-the-things-he-loves-while-kla-research-continues.html): As physicians, Michael’s parents struggled with watching him suffer from unexplained symptoms, without a diagnosis or path to make everything better. (1,431 words)
- [4 Documents You’ll Need When Caring for a Loved One with Alzheimer’s](/content/learn-more/4-documents-youll-need-when-caring-for-a-loved-one/index.html): A diagnosis of Alzheimer’s disease or dementia for your loved one can be overwhelming. There’s a lot to think about, from medical care to emotional support, from daily logistics to planning for the future. Staying organized with paperwork may seem minor, but for caregivers, it can make everything you’re dealing with a lot more manageable. (1,362 words)
- [Alzheimer's Foundations You Need to Know](/content/learn-more/alzheimers-foundations-you-need-to-know/index.html): PicnicHealth highlights the best Alzheimer's foundations that offer vital support and resources for patients, caregivers, and research into the disease. (1,260 words)
- [After 40 Years of Questions, These Siblings Finally Got an Answer](/content/learn-more/after-40-years-of-questions-these-siblings-finally-got-an-answer.html): Theresa’s children, both in their 40s, were recently diagnosed with alpha-mannosidosis after almost a lifetime of experiencing symptoms. (1,472 words)
- [13 ‘Rare Disease Truths’ That Will Make You Think](/content/learn-more/13-rare-disease-truths-that-will-make-you-think-a4cbb.html): Throughout the month of February, members of the rare disease community have been sharing what it’s really like using the hashtag #RareDiseaseTruth. (868 words)
- [A PSP Wish List: Common Items People Impacted by PSP Might Need](/content/learn-more/a-psp-wish-list-common-items-people-impacted-by-psp-might-need.html): Gradually, PSP patients can have trouble completing everyday activities. Here’s a compiled list of items that PSP community members have shared. (1,319 words)
- [All About Genetic Counseling](/content/learn-more/all-about-genetic-counseling/index.html): At the heart of genetic counseling is empowering patients and families with knowledge of genetic disease and being a supportive pillar as they navigate their journeys. (934 words)
- [CIDP Symptoms That Are Easy to Miss — and Why Early Recognition Matters](/content/learn-more/cidp-symptoms-early/index.html): More than 40% of CIDP patients are initially misdiagnosed. Learn what early symptoms look like and why getting to the right specialist sooner makes a difference. (710 words)
- [Advice for a mother of a child with PROS](/content/learn-more/advice-for-a-parent-raising-a-rare-child-from-a-rare-adult.html): “Instill confidence in him by letting him know he can do and be whatever he wants no matter what.” (1,252 words)
- [PicnicHealth | Beyond the Diagnosis](/content/learn-more/beyond-the-diagnosis/index.html): In October 2022, at the young age of 30, Rachel found herself facing a life-altering diagnosis. (786 words)
- [An Inside Look Into the Lives of 2 Sickle Cell Advocates](/content/learn-more/an-inside-look-into-the-lives-of-2-sickle-cell-advocates.html): Wunmi Bakare and Teonna Woolford are two Black women with unique approaches to sickle cell advocacy. Wunmi focuses on erasing the stigma of sickle cell disease through proactive engagement with the media, and Teonna fights to end the disparities in sickle cell reproductive health. (1,086 words)
- [Caring for a Child With Sanfilippo: A Day in Sadie's Life](/content/learn-more/a-day-in-the-life-with-sadie/index.html): Sadie hasn't really regressed as much as most kids her age with Sanfilippo, but the more therapy, the better. (1,359 words)
- [Alzheimer’s Tips for Caregivers: How to Organize Your Loved One’s Medical Information](/content/learn-more/alzheimers-tips-for-caregivers-how-to-organize-your-loved-ones-medical-information.html): Caring for a loved one with Alzheimer’s can feel like a full-time job. You want the best for your loved one but providing this level of care can be incredibly stressful. As a Proud Supporter of the Alzheimer’s Association, PicnicHealth is working to educate and raise awareness of valuable caregiver resources. In this blog, we will provide some tips for keeping organized that can help reduce stress while maintaining the highest level of care for patients with Alzheimer’s. (707 words)
- [4 Ways People With Inclusion Body Myositis Can Contribute to Research](/content/learn-more/4-ways-people-with-inclusion-body-myositis-can-contribute-to-research.html): May is Myositis Awareness Month! Myositis is an umbrella condition consisting of five rare subtypes, including inclusion body myositis (IBM). (1,238 words)
- [3 Links: Disability Pride Month](/content/learn-more/3-links-disability-pride-month/index.html): Content about disabilities, curated with the rare disease community in mind. (1,046 words)
- [PicnicHealth | Sickle Cell Disease](/content/resources/diseases/sickle-cell-disease/index.html): Everything you need to know about sickle cell disease (SCD), including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (2,139 words)
- [Tools to Manage Your IgA Nephropathy Care](/content/learn-more/best-tools-for-igan-management/index.html): Discover the best tools and apps to manage your IgA Nephropathy care. From wearable health monitors to symptom tracking apps, learn how to use technology to improve your kidney health and overall well-being. Explore tools such as PicnicHealth, blood pressure monitors, diet tracking apps, and more in this comprehensive guide. (1,026 words)
- [PicnicHealth | 13 ‘Rare Disease Truths’ That Will Make You Think](/content/learn-more/13-rare-disease-truths-that-will-make-you-think/index.html): Whether you’ve recently been diagnosed or you’ve been living with a rare disease for a while, managing your condition comes with some powerful truths. Here are 13 experiences commenters shared with #RareDiseaseTruth. (885 words)
- [PicnicHealth | Biliary Tract Cancer](/content/resources/diseases/biliary-tract-cancer/index.html): Everything you need to know about biliary tract cancer, including bile duct cancer, cholangiocarcinoma, gallbladder cancer, and ampullary carcinoma. This article covers symptoms of all forms of biliary tract cancer, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,955 words)
- [Receiving an Alzheimer's Diagnosis](/content/learn-more/alz-diagnosis/index.html): Alzheimer’s disease is the world’s most common form of dementia, affecting more than five million Americans over the age of 65, and approximately 200,000 Americans under 65 who are diagnosed with early-onset Alzheimer’s disease. It is characterized by problems with memory, thinking, and behavior. If you or someone you care for has been diagnosed with Alzheimer’s, it’s important to learn about the disease and it’s different stages so that you can get the right treatment and support. (1,025 words)
- [Join the Tepli-QUEST Study](/content/make-an-impact/tepli-quest/index.html): Help advance Stage 2 type 1 diabetes (T1D) research from home. No extra labs or visits required. (1,493 words)
- [Al’s Love for Prince and Phish Helps Him Cope With GM2](/content/learn-more/als-love-for-prince-and-phish-helps-him-cope-with-gm2.html): In the span of a month, Al was diagnosed with late-onset Tay-Sachs disease and his fiancée broke off their engagement. Here's how he learned to surrender to the flow. (879 words)
- [A Coin-Sized Dent in Sarah’s Skull Was the First Sign of GSD, or ‘Vanishing Bone Disease’](/content/learn-more/a-coin-sized-dent-in-sarahs-skull-was-the-first-sign-of-gsd-or-vanishing-bone-disease.html): When Sarah discovered a large dent on top of her head, it took several doctors to figure out that she had Gorham-Stout disease, which affects only 200 people in the world. (1,100 words)
- [3 Links: Representation, the Time Tax and Support](/content/learn-more/3-links-representation-the-time-tax-and-support/index.html): This week, Finding Dory and disability representation, how the time tax relates to rare disease and profound insight on giving and receiving support. (1,019 words)
- [After Her Daughter Jessica Was Diagnosed With NF2, Lisa Knew Knowledge Would Be Power](/content/learn-more/after-her-daughter-jessica-was-diagnosed-with-nf2-lisa-knew-knowledge-would-be-power.html): "As soon as I had the genetic results, I wanted to get it out to anyone who was willing to listen." (960 words)
- [11-Year-Old Matthew Has Advice for Anyone Whose Sibling Has a Rare Disease](/content/learn-more/11-year-old-matthew-has-advice-for-anyone-whose-sibling-has-a-rare-disease.html): Matthew and his older brother, Michael, enjoy goofing around together — just ask them what happened with a name tag at the National Institutes of Health! (1,276 words)
- [6 Ways to Communicate Better as an Alzheimer’s Caregiver](/content/learn-more/6-ways-to-communicate-better-as-an-alzheimers-caregiver.html): When a loved one has Alzheimer’s or dementia, everyday communication can be a challenge—but it doesn’t have to be an exercise in stress and frustration. A few simple tips can make daily interactions easier on both you and your loved one. (943 words)
- [5 Ways to Observe This Year's Black History Month](/content/learn-more/5-ways-to-observe-this-years-black-history-month/index.html): This year, the theme focuses on Black Health and Wellness — an especially timely focus. (704 words)
- [‘A Liver Transplant Is a Huge Freaking Deal’](/content/learn-more/a-liver-transplant-is-a-huge-freaking-deal/index.html): MMA is such a small part of the picture of what her life looks like, and now we can really just bask in the joy of Callaway experiencing life. (1,233 words)
- [PicnicHealth | Paroxysmal Nocturnal Hemoglobinuria](/content/resources/diseases/paroxysmal-nocturnal-hemoglobinuria/index.html): Everything you need to know about paroxysmal nocturnal hemoglobinuria (PNH), including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,933 words)
- [PicnicHealth | A Letter to My Younger Self With Dwarfism](/content/learn-more/a-letter-to-my-younger-self-with-dwarfism/index.html): Life isn’t always fair. You have just turned 15 ½ and you’ve lost feeling in your lower legs. You have spinal cord compression. Lower back surgery is absolutely necessary. I know you think that this is the end of the world, but some miracles can happen. You will experience even harder things in life. The recovery process is going to take some time, but your family and your friends will always be there to support you. You will walk again. You will be able to participate in sports again. Focus on your studies and don’t worry about dating. Your opportunities will come. You will eventually find love and you will get married. Stop worrying about what other people think. People will continue to laugh, point, and stare but the best thing that you can do is ignore it. If people ask questions, don’t be afraid to give them honest answers. Even though you don’t want to stay home on a Friday night with your parents, it’s worth it. They will always include you in their plans. They love you unconditionally. (1,220 words)
- [ASMD Wylder Nation](/content/make-an-impact/asmd-wylder-nation/index.html): Join PicnicHealth & Wylder Nation to advance ASMD research. Share your child's records with researchers working on the next treatment breakthrough. (2,987 words)
- [A New Novel Drug Could Impact the #1 Symptom of PBC](/content/learn-more/a-new-novel-drug-could-impact-the-1-symptom-of-pbc/index.html): Even though Primary Biliary Cholangitis (PBC) is considered a rare disease, it is the most common chronic cholestatic liver disease found in adult women. Thousands of people are living with this disease right now, the majority of which have itching symptoms. The “itch” is known as cholestatic pruritus and it is the biggest needed treatment area related to PBC. Not enough has been done to improve the quality of life with PBC as many have a constant itch that creates issues in every aspect of their life. (1,098 words)
- [After Victor Was Diagnosed With CLOVES and MCAP, Jenny Decided to Focus on the Things He Can Do](/content/learn-more/after-victor-was-diagnosed-with-cloves-and-mcap-jenny-decided-to-focus-on-the-things-he-can-do.html): Jenny’s son, Victor, was born with an enlarged cheek, which turned out to be a fatty overgrowth caused by a mutation on Victor’s PIK3CA gene. (886 words)
- [9 Ways to Stay Connected to Seniors and Immunocompromised Friends During COVID-19 Social Distancing](/content/learn-more/9-ways-to-stay-connected-to-seniors-and-immunocompromised-friends-during-covid-19-social-distancing.html): Human connection is critical to all our mental health during this time. Here are a few creative ways to remind your friends and family you care. (749 words)
- [Join the BEACON-SLE Study | PicnicHealth Research](/content/make-an-impact/beacon-sle/index.html): Contribute to lupus research with the BEACON-SLE Study. Earn compensation, get free medical records access, and help advance SLE treatment understanding. (1,693 words)
- [7 Books Featuring Kids with Rare Diseases](/content/learn-more/7-books-featuring-kids-with-rare-diseases/index.html): Families impacted by rare conditions may see their own experiences reflected back. (490 words)
- [6 Questions About NPC for Dr. Elizabeth Berry-Kravis of Rush University Medical Center](/content/learn-more/6-questions-about-npc-for-dr-elizabeth-berry-kravis-of-rush-university-medical-center.html): The esteemed pediatric neurologist spoke to AllStripes about Niemann-Pick disease type C research, the importance of medical records — and hope. (1,216 words)
- [NAVIGATE-CIDP Study | Join CIDP Research from Home](/content/make-an-impact/argenx-navigate-cidp/index.html): Participate in CIDP research from home. Get compensated up to $480, access your medical records, and help advance CIDP treatment understanding. (1,272 words)
- [Not Found](/content/resources/nm-org.html) (33 words)
- [PicnicHealth | Ulcerative Colitis](/content/resources/diseases/ulcerative-colitis/index.html): Everything you need to know about ulcerative colitis, a form of inflammatory bowel disease, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (2,193 words)
- [10 Things to Know About Wilson Disease](/content/learn-more/10-things-to-know-about-wilson-disease/index.html): Learn more about the causes, symptoms and treatments available for Wilson disease, a rare condition that causes free copper to build up in the liver. (904 words)
- [PicnicHealth | Multiple Sclerosis](/content/resources/diseases/multiple-sclerosis/index.html): Everything you need to know about multiple sclerosis (MS), including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,908 words)
- [2022 Multiple Sclerosis Research Update](/content/learn-more/2022-multiple-sclerosis-research-update/index.html): At the 38th Congress of the European Committee for Treatment and Research in Multiple Sclerosis PicnicHealth data was featured in two posters presented by our research partners. Continue reading below for more information on how your contribution is supporting leading Multiple Sclerosis researchers. (1,278 words)
- [3 Lives, 3 Different ALD Experiences](/content/learn-more/3-lives-3-different-ald-experiences/index.html): A conversation with three AllStripes Ambassadors for the ALD research program. (1,101 words)
- [PicnicHealth | Lupus](/content/resources/diseases/lupus/index.html): Everything you need to know about lupus, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,913 words)
- [PicnicHealth | 9 Podcasts Highlighting Voices From the Rare Disease Community](/content/learn-more/9-podcasts-highlighting-voices-from-the-rare-disease-community.html): Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community! (583 words)
- [12 Podcasts Highlighting Voices From the Rare Disease Community](/content/learn-more/12-podcasts-highlighting-voices-from-the-rare-disease-community.html): Whether you’re already a podcast lover or are just starting to explore the podcast universe, you're in luck: There are a good number of podcasts that highlight voices from the rare disease community! We’ve rounded up some of the rare disease podcasts we love that are going strong and putting out new and upcoming episodes. Here are some reliable — and educational — podcasts from and for the rare disease community: (720 words)
- [Shape the future of ATTR research](/content/make-an-impact/az-opus-w/index.html): When you contribute your medical records to the ATTR research, you join thousands of other patients who have participated in research and empowered their communities through PicnicHealth (1,474 words)
- [5 Potential Coronavirus Treatments: Who's Working on Coronavirus](/content/learn-more/5-potential-coronavirus-treatments-whos-working-on-coronavirus.html): Learn what biotech companies are working on a potential coronavirus vaccine and other treatments. Current prospects include Gilead's remdesivir, Moderna Therapeutics mRNA vaccine, Ascletis Pharma ASC-09 and ritonavir, CanSino Ad5-nCoV vaccine, and Abbie's Kaletra. (544 words)
- [Join the OBSERVE-NMO Study| PicnicHealth](/content/make-an-impact/observe-nmo/index.html): Participate in NMOSD research from home. Share your UPLIZNA® experience, receive compensation, and get free access to your organized medical records. (1,412 words)
- [ORBIT-CIDP](/content/make-an-impact/orbit-cidp/index.html): This study collects real-world data to better understand CIDP, including condition progression, treatment effectiveness, and patient experiences. (1,246 words)
- [7 Movies and TV Shows Featuring Characters With a Rare Disease](/content/learn-more/7-movies-and-tv-shows-featuring-characters-with-a-rare-disease.html): Hollywood hasn’t always made an effort to depict rare disease on screen, and when it has, the results have been mixed. (518 words)
- [5 Mental Health Resources to Help Rare Patients & Families Feel Less Alone](/content/learn-more/5-mental-health-resources-to-help-rare-patients-families-feel-less-alone.html): Mental health is becoming a greater part of the conversation among the rare disease community and its supporters. (674 words)
- [5 Advocacy Organizations for IgAN Warriors](/content/learn-more/5-advocacy-organizations-for-igan-warriors/index.html): Looking for support and resources for IgA Nephropathy? Check out these top 5 advocacy organizations, including The IgAN Foundation, NephCure, National Kidney Foundation, American Association of Kidney Patients, and American Kidney Fund. (606 words)
- [PicnicHealth | Cervical Cancer](/content/resources/diseases/cervical-cancer/index.html): Everything you need to know about cervical cancer, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (1,820 words)
- [5 Tips for Better Doctor's Visits with PNH](/content/learn-more/5-tips-for-better-doctors-visits-with-pnh/index.html): Living with a rare disease brings you to a doctor’s office more than the average person. To make the most of your time with your doctor, it is important to be prepared, listen, and speak up in order to build rapport with them. Here are my five tips to help you do this and improve your next doctor’s visit:Take notes. When talking to a doctor, it is easy to nod and agree with everything they are saying. It may all make sense at that moment, but the second you leave the office, so much information is forgotten. Taking notes on your phone or in a notebook helps ensure you have all the information to look back on if you forget what is discussed.Organize and keep track of your medical records. Having your records and imaging readily available, especially if you are seeing a new doctor, is extremely helpful not only for the doctor, but also yourself. Doctors will want to review your history, but you yourself may want to review your records to mark down how you physically feel and compare them to the actual testing. Programs like PicnicHealth’s Timeline make it easy to integrate your medical records between all your doctors (PNH-related or not), hospital visits, lab work, etc., and keep them readily available in one place.Keep a running list of questions between appointments. Whenever a question pops into your head, write it down! Bring that list to your appointment in whatever form is easiest for you; write them out, keep them stored on your phone, or even print them out so you can write the answers next to each question as you ask your doctor. Listen to your doctor, but remember you do not have to be a silent participant. Try to make sure appointments feel like a discussion rather than a one-sided lecture. Don’t forget, it’s your health, and no one knows your story better than you do.Stay informed. You are your best advocate, staying informed about PNH news is a great way to understand the disease and any opportunities you might have for new treatments. There are also low-effort ways to participate in PNH research with observational research studies. PicnicHealth is a great platform for both understanding your medical history and contributing to observational research.Don’t be intimated. Your doctor may have extensive education and multiple degrees, but don’t be nervous around them, they are humans too, and are there to help you. The more relaxed you are, the easier it is to open up and give them the information they need to give you the best care. (916 words)
- [Join the COMPASS Study for MMA & PA Research | PicnicHealth](/content/make-an-impact/compass/index.html): Help advance research in methylmalonic acidemia (MMA) and propionic acidemia (PA) from home. Complete surveys, get $250, and access your medical records. (984 words)
- [PicnicHealth | CAHtalog](/content/make-an-impact/wtcah/index.html): Together we can make a difference for CAH care. With the CAHtalog™ registry, you get access to your complete medical records and you can change what researchers know about classic CAH to help improve care and treatments - plus earn up to $150 a year when you complete optional surveys! (1,683 words)
- [PicnicHealth Clinic | Virtual Care & Preventive Health](/content/our-clinic/index.html): Access personalized preventive care, unified care plans, and virtual visits with PicnicHealth's Clinic. Connect with providers who see your full health history. (645 words)
- [OPUS-W](/content/make-an-impact/orsini-opus-w/index.html): OPUS-W is an observational research effort, meaning no additional appointments, lab work, or tests are required. You can participate entirely from the comfort of your home. (1,265 words)
- [Lesley Holroyd | CAH](/content/change-champions/lesley-holroyd/index.html): Meet Lesley Holroyd, whose life story is a testament to determination and advocacy. Her journey living with congenital adrenal hyperplasia (CAH) is marked by unique challenges and (646 words)
- [Meet Victoria Garcia, PicnicHealth Change Champion](/content/change-champions/victoria-garcia-achondroplasia/index.html): Meet Victoria Garcia, a PicnicHealth Change Champion. She transitioned from neonatal nurse to advocate for Achondroplasia, dedicating herself to research, community support, and he (679 words)
- [Taylor Nolen | CAH Change Champion](/content/change-champions/taylor-nolen/index.html): I'm Taylor Nolen, a proud resident of a quaint small town in Georgia. My world revolves around my loving husband, Brett, and our three incredible children: Landon, Harper, and Maddox. (361 words)
- [PicnicHealth | CAHtalog](/content/make-an-impact/cah/index.html): Together we can make a difference for CAH care. With the CAHtalog™ registry, you get access to your complete medical records and you can change what researchers know about classic CAH to help improve care and treatments - plus earn up to $150 a year when you complete optional surveys! (1,236 words)
- [Morgan Terry | Multiple Sclerosis Change Champion](/content/change-champions/morgan-terry/index.html): Morgan uses her genetic chaos and general in wellness to help her understand and empathize with other patients as she continues to advocate for adequate pain management (571 words)
- [Change Champions - Kristen Gonzales | IgAN](/content/change-champions/kristen-gonzales-igan/index.html): "Get to know Kristen Gonzales, a courageous advocate for IgAN, Lupus, and Rheumatoid arthritis patients and PicnicHealth Change Champion. Kristen is passionate about fostering community, art, and crea (383 words)
- [Change Champions - Stephanie Gish | IgAN](/content/change-champions/stephanie-gish-igan/index.html): "Follow Stephanie Gish's journey from Miss EIU Fitness to a PIcnicHealth Change Champion and advocate fostering hope for the Crohn's disease and IgA nephropathy community. " (416 words)
- [Heather Wilmoth](/content/change-champions/heather-wilmoth/index.html): Meet Heather Thurgood Wilmoth, a caregiver and PicnicHealth Change Champion. She joined PicnicHealth to support Hungtinton’s Disease research and build community. (354 words)
- [Everything you need to know about breast cancer](/content/resources/about-breast-cancer/index.html): This comprehensive guide to breast cancer helps patients and their supporters research symptoms, diagnosis, mammograms, biopsies, and potential treatment options. (1,833 words)
- [Lydia H. | Achondroplasia Change Champion](/content/change-champions/lydia-h-achondroplasia/index.html): Lydia, residing in Urbana, Ohio with her husband Charlie, has become a symbol of resilience and love in the parenting community, especially after her daughter Dagny was diagnosed with achondroplasia. (226 words)
- [Be part of something bigger](/content/make-an-impact/index.html): PicnicHealth partners with leading researchers to develop breakthroughs in medicine. Contribute simply by volunteering to share your anonymized medical data. (1,000 words)
- [Marc P. | CAH Change Champion](/content/change-champions/marc-p/index.html): Marc’s story of living with CAH, facing challenges, and finding strength through support. (267 words)
- [PicnicHealth | Research Studies](/content/find-a-study/index.html): Find a Study. Contributing to research has never been easier. (499 words)
- [Cahtalog Registry](/content/make-an-impact/pantherxcah/index.html): Together we can make a difference for CAH care. With the CAHtalog™ registry, you get access to your complete medical records and you can change what researchers know about classic CAH to help improve care and treatments - plus earn up to $150 a year when you complete optional surveys! (678 words)
- [Rachel Scvetz, a 30-year-old PicnicHealth Change Champion and breast cancer advocate](/content/change-champions/rachel-shvetz/index.html): Meet Rachel Shvetz, a PicnicHealth Change Champion navigating breast cancer and advocating for awareness for young patients and dispelling misconceptions. (315 words)
- [Pledge Study](/content/make-an-impact/pledge/index.html): You understand living with PNH better than anyone. With your help, we may gain insights that can help us better understand the experience PNH patients have with VOYDEYA™ (danicopan) and how it may impact their daily life. (1,154 words)
- [Melissa Mills, PicnicHealth Change Champion and achondroplasia advocate](/content/change-champions/melissa-mills/index.html): Meet Melissa Mills, a dedicated mother navigating her daughter Eden's achondroplasia diagnosis and PicnicHealth Change Champion. She's passionate about medical research and equitable access to records (240 words)
- [Change Champions - Elisa Ramos](/content/change-champions/elisa-ramos/index.html): Meet Elisa Ramos, a Myasthenia Gravis advocate and PicnicHealth Change Champion. She joined PicnicHealth to educate the MG community about real-world data. (368 words)
- [Change Champions - Sarah You | IgAN](/content/change-champions/sarah-you/index.html): Meet Sarah You, a PicnicHealth Change Champion for IgA Nephropathy. Read about her journey, fight, self-care approach, and dream of becoming a compassionate physician. (195 words)
- [Explore the App | PicnicHealth Medical Records Platform](/content/explore-the-app/index.html): Access, organize, and understand your complete health history in one place. AI-powered tools help you navigate your care with confidence. (314 words)
- [Diane Chen | Change Champion](/content/change-champions/diane-chen/index.html): "Meet Diane Chen, a breast cancer survivor and PicnicHealth Change Champion. Her journey in overcoming a second cancer diagnosis ignited a passion for medical research and communit (498 words)
- [Privacy Policy](/content/privacy-policy/index.html) (2,306 words)
- [Allie Schmidt](/content/change-champions/allie-schmidt/index.html): Meet Allie, an ALS patient and Picnic Health Change Champion dedicated to supporting others, advancing research, and fostering hope for ALS medical research. (356 words)
- [Change Champions - Lance Jasper Jones](/content/change-champions/lance-jasper-jones/index.html): Meet Lance Jasper Jones, a music producer, student, and PicnicHealth Change Champion. He joined PicnicHealth to help move Sickle Cell medical research forward. (229 words)
- [Kidney Transplant 100](/content/make-an-impact/kidney-transplant/index.html) (504 words)
- [PicnicHealth](/content/resources/videos/bms-discover-hcm-registry/index.html) (30 words)
- [How to Request Medical Records - Internal Guide](/content/resources/records/index.html): PicnicHealth's internal guides on requesting medical records from major hospitals and practices. (766 words)
- [Janet B. | Achondroplasia Change Champion](/content/change-champions/janet-b-achondroplasia/index.html): Janet's story is a poignant and inspiring journey of a mother whose life was transformed when her daughter was diagnosed with achondroplasia at four months old. (213 words)
- [Grace Lombardo | Change Champion](/content/change-champions/grace-lombardo/index.html): Follow PicnicHealth Change Champion Grace Lombardo's inspiring journey as a breast cancer survivor and influencer. (269 words)
- [Kenzie S. | Achondroplasia Change Champion](/content/change-champions/kenzie-s-achondroplasia/index.html): Looking to the future, Kenzie is committed to raising awareness about achondroplasia and contributing to research (206 words)
- [StrivePD](/content/make-an-impact/strivepd/index.html): The team behind StrivePD has partnered with PicnicHealth to qualify candidates for Parkinson’s disease clinical trials. Through the StrivePD Trial Matching Program, your medical records will be collected to determine your eligibility and you’ll get a free PicnicHealth account to view and organize your health history. (689 words)
- [Resources & Articles](/content/blog/index.html): A basket of patient stories, research updates, and company news. (543 words)
- [Cindy Streltzov](/content/change-champions/cindy-streltzov/index.html): Meet Cindy Streltzov, a world traveler and myasthenia gravis advocate who became a PicnicHealth Change Champion to inspire hope and perseverance in the face of health challenges. (155 words)
- [Change Champions - Erin Fortin](/content/change-champions/erin-fortin/index.html): Meet Erin Fortin, a creator and Paroxysmal nocturnal hemoglobinuria (PNH) Change Champion. She joined PicnicHealth to help move PNH research forward. (68 words)
- [Change Champions - Cristie Field | IgAN](/content/change-champions/cristie-field-igan/index.html): Meet Cristie Field, an IgAN advocate, and PicnicHealth Change Champion, sharing her journey of resilience and commitment to moving IgAN research forward. (164 words)
- [Change Champions](/content/change-champions/index.html): Become a PicnicHealth Change Champion today. Join a passionate community advocating for patient-centered medical research. Share your voice and make an impact. (579 words)
- [Welcome to PicnicHealth | Your Healthcare Journey Simplified](/content/welcome/tremhance-study/index.html): PicnicHealth collects and organizes your medical records in one secure place. Access your complete health history, track trends, and share with confidence. (259 words)
- [UCSF](/content/resources/records/ucsf/index.html) (635 words)
- [Pricing - PicnicHealth Membership & Connected Care Visits](/content/pricing/index.html): Choose annual membership ($499/yr or $0 with research) for organized health records, or pay-per-visit ($149) for virtual care. HSA/FSA accepted. (588 words)
- [PicnicHealth | Get Support](/content/resources/get-support/index.html): We're here to help! Please select a support category below, or reach us at hello@picnichealth.com to answer any questions you may have. (505 words)
- [Your medical data is yours to own.](/content/own-your-data/index.html): PicnicHealth unlocks access without compromising security. We believe that better care happens when you have control over your records (541 words)
- [Covid-19](/content/make-an-impact/covid-19/index.html) (234 words)
- [For Parents & Caregivers](/content/caregivers/index.html): As a parent or caregiver, you play a vital role in managing your loved one's health journey. PicnicHealth is here to support you. (329 words)
- [Help Save Lives from Cervical Cancer | PicnicHealth](/content/make-an-impact/ccc/index.html): Join PicnicHealth's cervical cancer research. Share your anonymized health records to accelerate breakthroughs. (454 words)
- [Breast Cancer Research | PicnicHealth](/content/make-an-impact/breastcancer/index.html): Shape the future of breast cancer research. Contribute your medical records to empower your community and help advance care for future patients. (323 words)
- [PicnicHealth's Disease Backgrounds](/content/resources/diseases/index.html): PicnicHealth's internal guides on everything you need to know about different disease, including symptoms, how they're diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments. (16 words)

## About Pages

- [About PicnicHealth | Patient-Centered Health Records](/content/about/index.html): PicnicHealth empowers patients to take control of their health journeys. More than a medical record—built around you with AI-powered technology. (466 words)
- [Contact Us | PicnicHealth](/content/contact/index.html): Contact us for account support, researcher inquiries, provider medical record fulfillment, press relations, or further questions. (38 words)

## Resources

- [Full Page Index](/index.html): Browse all cached pages with rich metadata
- [About This Cache](/content/about.html): Methodology, technical details, and usage guidelines
- [XML Sitemap](/sitemap.xml): Machine-readable sitemap for crawler discovery
- [Robots.txt](/robots.txt): Crawler directives