learn-more/
283 pages · Updated July 26, 2026
Pages
- Mandy Is the First Person in the World Found With This Variant in the PIK3CA Gene
- Introducing New Care Features to Simplify Your Health Journey
- Lindsay Helps Teens With Physical Differences Embrace Who They Are
- My PNH Journey: The Power of a Diagnosis
- IgA Nephropathy Symptoms: Signs You Should Look Out For
- No Family Facing a Rare Diagnosis Should Get Outdated Information
- My PNH Journey: The Fight Continues
- ‘My Purpose Right Now Is to Help Her Be the Best She Can Be’
- Kristen's Journey With Limb-Lengthening & Achondroplasia
- PicnicHealth | Navigating Life with Achondroplasia: Brynn's Story
- How Montessori Practices Can Support Dementia Caregivers
- ‘It’s Okay to Talk About It’
- ‘I Would Gladly Trade My Disability Plate for a Cure’
- CIDP Prognosis: What to Expect and Why Research Still Matters
- PicnicHealth | A Closer Look at Rare Patient Voice's Role in Research
- Living with IgAN: My Personal Story
- Kidney Biopsy for IgAN: Understanding the Procedure and Its Importance
- PicnicHealth | Journey of Understanding: A Family's Experience with Achondroplasia
- My Son Graham
- New Data Presented from LC-FAOD Odyssey
- ‘Keep Looking, Keep Working and Keep Fighting’
- Lifting Up Legacy Families
- Living With a Rare Disease Is Not Cheap
- PicnicHealth | Navigating the Holidays with a Chronic Illness
- ‘Make Sure You Find a Support System’
- Jessie’s Son’s CCM3 Diagnosis Unlocked a Family Medical Mystery
- Karen Wants More People to Know Her Son — and to Learn About Lesch–Nyhan Syndrome
- Love, Challenges, and Advocacy in the World of CAH
- ‘Just Keep Grinding’: How Jareb Deals With Wilson Disease
- PicnicHealth | Mandy Is the First Person in the World Found With This Variant in the PIK3CA Gene
- ‘It Is Time for Patients to Gain More Power Over Their Health’
- Manuel Wants to Make Sure Newcomers to the IBM Community Get Support From the Start
- It’s Not ‘Just’ Fatigue
- After a wAIHA Diagnosis, I Know Remission Isn't a Gaurantee
- I’m Grateful for Every Moment I Get to Spend Alive and Well
- Jana and I Were Each Other’s Friends
- I Learned I Couldn’t Do This Alone
- Lifestyle Changes to Manage IgAN Care
- ‘It’s About More Than Just Me’
- Life With Leigh Syndrome Is Even Bigger Than I Thought It Would Be
- IgAN Treatment: Options for Managing Symptoms and Supporting Kidney Health
- I Learned Everything I Know About Wheelchairs on YouTube
- Mick Has a Daily Practice for Coping With His CIDP Diagnosis
- ‘I Have More Hope Now Than I Ever Did Before’
- When Is a Kidney Transplant Necessary for IgAN Patients? The Procedure Explained
- Life with IgA Nephropathy: What to expect after diagnosis
- IBD vs IBS: What's the difference?
- Fabry Disease, Mental Health & Young People
- How PicnicHealth supports research and the sickle cell community
- PicnicHealth | It’s OK If You Don’t ‘Grow Bolder As You Grow Balder’ with Breast Cancer
- ‘It’s Important to Us That People Know Who She Was’
- How Stephan Learned to Cope With His Son’s Completely Unexpected Diagnosis of SURF1-Associated Leigh Syndrome
- How PicnicHealth is supporting more inclusive research on MS
- ‘Growing Up, I Was Different From Everyone Else’
- I Know Firsthand the Treatment Options Are Not Adequate
- I Advocate Not Only For Melissa, But For All People With PA
- How Patient Experiences Help The Fight Against Alzheimer’s
- How I Start Conversations About Sickle Cell
- ‘I Decided to Fight Like a Mother’
- How Having a Rare Disease Took a Toll on Leah’s Friendships
- How a PicnicHealth Timeline Comes Together
- How to Set Up Your Fitbit and Connect It to PicnicHealth
- How to Find Medications in Your Electronic Health Records
- ‘I Was Raised Reading Food Labels’
- PicnicHealth | How to Advocate for Your Child with Achondroplasia in a Medical Setting
- How Far Are Rare Patients Going for Care?
- Access your medical records & help IBD research – Here’s how
- How Myositis Support and Understanding Association Adapts and Stays Nimble
- How to Find a Culturally Competent Provider
- How Kim’s Parental Intuition Helped Her Son James Get Diagnosed
- How Larry Is Honoring His Wife Rachel
- From Italy to Holland, One Step at a Time
- How Novel Therapies are Impacting Hemophilia A and B
- I Freaking Love Selfies
- How Mike Overcomes His Own MS Challenge
- How PicnicHealth is pioneering research in lupus with real-world data
- How the Rare Disease Community Is Adapting to COVID-19 Restrictions
- How to Get Your Immunization Records
- How is PicnicHealth different from my patient portal?
- How to Find In-Home Care
- How breast cancer research studies can help your family with early detection
- How to recognize and manage caregiver stress
- For Me, CN1 Meant a Liver Transplant — and Learning to Sleep Without Phototherapy Lights
- Going From ‘Crigler-Najjar Kid’ to Post-Transplant Adult
- Growing Up Rare: How Keeping Hannah’s Diagnosis Quiet Affected Her Mental Health
- How Randy Found a New Purpose
- MLD Led This Family to Raise Awareness on TIkTok
- How a Sore Throat Led to Elizabeth’s GLA Diagnosis
- How Leeya’s GLA Diagnosis Tested Friendships and Led to a Passion for Advocacy
- How a Mother of Three Manages Sickle Cell
- How HD Medical Data Impacts Ongoing Research
- How PicnicHealth studies differ from typical clinical trials
- How Having a Child With a Rare Disease Changed Danielle’s Teaching Style
- ‘Hi, I’m Ken With AMN’
- How My PROS Condition Has Affected My Social Life
- ‘Hi, My Mom Has PSP’
- How Crohn's Disease Drove this Rational Person to Fringedom and Back
- Empowering Patients with AI-Driven Access to Medical Records
- Guidelines on Sickle Cell Disease Treatments
- Having IBM Taught Me to Live Day by Day
- 5 Alzheimer's Content Creators You Need to Follow
- PicnicHealth | Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition
- Rare Disease Day 2022: Rare Snapshots
- Virtual Assessment User Guide
- When Your Child’s Experience Can Help Someone Else
- What I Wish I Knew About Medical Records
- PicnicHealth | Why You're Never 'Done' Even After Breast Cancer Treatment
- What Boldness Means to Me
- Transcript: ‘Hi, My Mom Has PSP’
- When Children Become the Caregivers
- ‘Why Not Try to Live a Little?’
- Together, We Are a Force
- What Is a Research Consent?
- Why Is Drug Development for Rare Diseases So Challenging?
- PicnicHealth Explains: What is a Personal Health Record?
- PicnicHealth | When People Point and Stare
- New at PicnicHealth: AI assistant, issue flagging, caregiver appreciation and more!
- When a Rare Disease Threatens Your Livelihood — and Your Life
- What’s Really Important in Life
- Why PicnicHealth is using real-world data for a new kind of research in Sickle Cell
- What I Want People to Understand About Having Morquio A
- What Kristen Learned After Her Son Sam Was Diagnosed With GM2
- PicnicHealth | When You're the Youngest Breast Cancer Patient Your Doctor's Ever Seen
- Who Owns Your Electronic Medical Records? PicnicHealth Explains
- What Happened When Kasey Joined Forces With Other Parents
- What It’s Like to Live With a ‘Children’s Disease’ at 38
- Whole Exome Sequencing Gave This Family a Diagnosis That Changed Their Whole Perspective
- What Is Newborn Screening and Why Is It Important?
- What’s the Difference Between a 504 and an IEP?
- ‘You Have to Stay Positive — But You’ve Got to Get to That Point First.’
- Raising Awareness for Rare: One Day at a Time
- What Charles Has Learned From the CCM3 Community
- What It Takes to Develop A Coronavirus Vaccine
- One family's fabry diagnosis journey
- We Don’t Want Other Parents to Feel the Same Pain
- Mandy Sellars on Living With PROS and People Reacting to Her Physical Differences
- The Top Kidney Disease Content Creators for IgAN Patients
- What research is being done to find a cure for MS?
- The Latest Medical Research to Find Treatments and Cures for Hemophilia
- Understanding IgAN Diagnosis: Symptoms, Tests, and Treatment
- What Does ‘Care Team’ Mean to You?
- What I Realized After My Son Ezra Was Diagnosed With IRF2BPL
- What Is a Natural History Study, and Why Is It Important?
- Tracing the Underrepresentation of Black Physicians in America
- ‘We Didn’t Know What Was Happening to Her’
- PicnicHealth’s Gillian Hanson Aids Bleeding Disorder Patients
- What Is Classical CAH? Symptoms, Causes, Diagnosis, and Treatment
- Tips for Preparing for a Doctor’s Appointment When You Have a Rare Condition
- Webinar: PicnicHealth's PNH Research Study
- We Were Asking Questions Nobody Could Answer
- Study Guide for Remote Visits | PicnicHealth
- These Parents Took a Gamble to Save Their Son’s Hearing From a Rare Disease
- The Power of Hashtags
- The Future of Sickle Cell Care
- This Mom With CIDP Is Fighting for Answers
- This Mom Is Fighting for Answers After Losing Two of Her Children to a Rare Disease
- Ulcerative Colitis Diets: Is this Safe to Eat?
- The Benefits of Electronic Health Records (EHRs)
- Designing Trials for Families: A Rare Disease Caregiver's Perspective
- This Mom of a 7-year-old With Hunter Syndrome Is Fighting for Her Family
- To Honor Her Sons’ Legacies, This Mom Dedicated Her Life to Helping Others
- PicnicHealth community voices: what you need to know about joining clinical studies
- PicnicHealth Gives Back This Holiday Season 2022
- Smart Insoles User Guide
- Your IgAN Lab Values: A Comprehensive Guide
- Quinn Finds Joy in Everything
- The Truth About Growing Up With Fabry Disease
- There’s a New Superhero in Town
- ‘The Road Ahead Is Going to Be Difficult, But You Are Equipped for It’
- Photos Not Taken: A Video Series on Living With Sickle Cell Disease
- Scott Isn’t Going to Let His IBM Diagnosis Define Him
- The Most Important Thing I’ve Learned Since My Daughter Was Diagnosed With Kabuki Syndrome
- The Latest Medical Research to Find Treatments and Cures for PNH
- These Parents Raised $3 Million to Jumpstart Research on Their Daughter’s Rare Disease
- Finding a New ‘Normal’
- These Partners On and Off the Dance Floor Are Pushing for PSP Research Together
- ‘There Really Isn’t Anyone Else Who Understands’
- An Introduction to Electronic Health Records
- Tim’s Rare Disease Journal Is Helping Thousands of People Find Hope
- The Many Forms of Grief
- Timeline of Records Brings Peace of Mind
- Stephen Started a Facebook Group to Bring Positivity to the Myasthenia Gravis Community
- This Holiday Season, Talk About Your Family Health History
- The Difference Between EHRs and EMRs
- ‘No One Could Figure Out What Was Wrong’
- Marc’s Journey with CAH: Overcoming Challenges with Strength and Support
- New at PicnicHealth: Smart highlights, pinned imaging and more!
- My Medical Binder, My Rare Diagnosis — and Everything After
- Ensuring High-Quality Data for Rare Disease Research
- Stella's CDKL5 Diagnosis Showed Him What Life Is All About
- Webinar Transcript: Caregivers for Compromise Webinar
- The Legacy Mary Helped Jerry Make
- Webinar Transcript: Allie Schmidt, Disability Dame and PicnicHealth
- The Kleefstra Community Helped Matt Adjust to His Family's New Reality
- Sarcoidosis Journey by Michael
- Our new AI assistant – and how we got here
- Signs and Symptoms of Alzheimer's
- The Latest Medical Research to Find Treatments and Cures for Lupus
- Our Daughter's Batten Disease Diagnosis Made Us Determined
- The Answer to a Question James Had Been Asking for 31 Years
- Shaye Is Grateful That Social Media Can Connect Her With Others Impacted by HDFN
- Reading My Dad's ALD-Related Medical Records Helped Me Understand Him in a New Way
- ‘It was a patient.’
- PicnicHealth Webinar: Caregiver Tips for Alzheimer’s
- A Guide Finding a Nephrologist
- New at PicnicHealth: In-app rewards, pins, care team updates and more!
- She Stumbled Onto Her Father’s Diagnosis While Studying PSP in Class
- ‘Even Though I’m in Remission, I’m Still Tired’
- COVID-19 and the Rare Community
- PicnicHealth Rebrands as PicnicAI | Press Release
- What It's Like to Take Care of a Child With ALD
- Finding Joy and Community in the Midst of a Sanfilippo Diagnosis
- Everything to Know About Drug Repurposing
- Dreams of Motherhood, Deferred
- Qualitative Interview User Guide
- Doctors First Thought Mindy Had Leukemia, But Her Nosebleeds Were a Sign of Something Far More Rare
- The PicnicHealth guide to caregiving
- Cure IBM: Growing Research and Awareness for the Common Muscle Disease
- Andrea Wants People With Rare Disease to Be Treated Like Everyone Else
- Every Bruise Could Be Deadly for This Adventure-Lover With the Rare Condition ITP
- Emily Wants to Show Other Caregivers the Importance of Taking Care of Yourself
- Playing Cody on ABC's 'The Good Doctor' and Representing Kabuki Syndrome on TV
- Rare Diseases and Autism Spectrum Disorder: What You Should Know
- Feeling More Me
- PicnicHealth | Empowering Wellness: Spotlight on Three Organizations Championing Black Mental and Physical Health
- AAPI Heritage Month: Asian Representation and Inclusion in Research
- Don't Panic. You're Not Alone.'
- 8 Highlights From the Global Genes RARE Patient Advocacy Summit
- A Glimpse Into Linnea’s Future
- PicnicHealth | Embracing Life's Uniqueness: Lydia and Charlie’s Journey with Achondroplasia
- Coronavirus Prevention Tips from a PicnicHealth Doctor
- COVID-19 and IgAN: What You Need to Know
- PicnicHealth | Join the #ShareYourRare Campaign!
- Classical CAH Symptoms by Age: Signs in Babies, Children, and Adults
- Lessons from Caring for My Mother
- About Alzheimer's
- Bullied Because of a Rare Condition, This Dancer Is Now Redefining Beauty
- CIDP vs. MS: Two Conditions That Are Frequently Confused — Here's the Difference
- Bringing a Creative Approach to My Access Tools
- As a Black Woman, I Felt Like My Pain Wasn’t Taken Seriously
- PicnicHealth | CARES Podium Presentation
- A Repurposed Drug Helps Michael Do the Things He Loves, While KLA Research Continues
- 4 Documents You’ll Need When Caring for a Loved One with Alzheimer’s
- Alzheimer's Foundations You Need to Know
- After 40 Years of Questions, These Siblings Finally Got an Answer
- 13 ‘Rare Disease Truths’ That Will Make You Think
- A PSP Wish List: Common Items People Impacted by PSP Might Need
- All About Genetic Counseling
- CIDP Symptoms That Are Easy to Miss — and Why Early Recognition Matters
- Advice for a mother of a child with PROS
- PicnicHealth | Beyond the Diagnosis
- An Inside Look Into the Lives of 2 Sickle Cell Advocates
- Caring for a Child With Sanfilippo: A Day in Sadie's Life
- Alzheimer’s Tips for Caregivers: How to Organize Your Loved One’s Medical Information
- 4 Ways People With Inclusion Body Myositis Can Contribute to Research
- 3 Links: Disability Pride Month
- Tools to Manage Your IgA Nephropathy Care
- PicnicHealth | 13 ‘Rare Disease Truths’ That Will Make You Think
- Receiving an Alzheimer's Diagnosis
- Al’s Love for Prince and Phish Helps Him Cope With GM2
- A Coin-Sized Dent in Sarah’s Skull Was the First Sign of GSD, or ‘Vanishing Bone Disease’
- 3 Links: Representation, the Time Tax and Support
- After Her Daughter Jessica Was Diagnosed With NF2, Lisa Knew Knowledge Would Be Power
- 11-Year-Old Matthew Has Advice for Anyone Whose Sibling Has a Rare Disease
- 6 Ways to Communicate Better as an Alzheimer’s Caregiver
- 5 Ways to Observe This Year's Black History Month
- ‘A Liver Transplant Is a Huge Freaking Deal’
- PicnicHealth | A Letter to My Younger Self With Dwarfism
- A New Novel Drug Could Impact the #1 Symptom of PBC
- After Victor Was Diagnosed With CLOVES and MCAP, Jenny Decided to Focus on the Things He Can Do
- 9 Ways to Stay Connected to Seniors and Immunocompromised Friends During COVID-19 Social Distancing
- 7 Books Featuring Kids with Rare Diseases
- 6 Questions About NPC for Dr. Elizabeth Berry-Kravis of Rush University Medical Center
- 10 Things to Know About Wilson Disease
- 2022 Multiple Sclerosis Research Update
- 3 Lives, 3 Different ALD Experiences
- PicnicHealth | 9 Podcasts Highlighting Voices From the Rare Disease Community
- 12 Podcasts Highlighting Voices From the Rare Disease Community
- 5 Potential Coronavirus Treatments: Who's Working on Coronavirus
- 7 Movies and TV Shows Featuring Characters With a Rare Disease
- 5 Mental Health Resources to Help Rare Patients & Families Feel Less Alone
- 5 Advocacy Organizations for IgAN Warriors
- 5 Tips for Better Doctor's Visits with PNH