## Community Stories ### Prepared for the 2 Percent Marc’s journey with CAH shows his strength, family support, and how he overcomes challenges every day. [Read More](/content/learn-more/prepared-for-the-2-percent/index.html) ### Maddox's Journey: Love, Challenges, and Advocacy in the World of CAH 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. [Read More](/content/learn-more/maddoxs-journey-love-challenges-and-advocacy-in-the-world-of-cah/index.html) ### Making a Difference: A Closer Look at Rare Patient Voice's Role in Research 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. [Read More](/content/learn-more/making-a-difference-a-closer-look-at-rare-patient-voices-role-in-research/index.html) ### Amplify Your Voice: Join the #ShareYourRare Campaign! 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. [Read More](/content/learn-more/amplify-your-voice-join-the-shareyourrare-campaign/index.html) ### How to Advocate for Your Child with Achondroplasia in a Medical Setting 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. [Read More](/content/learn-more/how-to-advocate-for-your-child-with-achondroplasia-in-a-medical-setting/index.html) ### Embracing Life's Uniqueness: Lydia and Charlie’s Journey with Achondroplasia 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. [Read More](/content/learn-more/embracing-lifes-uniqueness-lydia-and-charlies-journey-with-achondroplasia/index.html) ### Navigating Life with Achondroplasia: Brynn's Story 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. [Read More](/content/learn-more/navigating-life-with-achondroplasia-brynns-story/index.html) ### Journey of Understanding: A Family's Experience with Achondroplasia The journey of Janet's family into the world of achondroplasia began unexpectedly when their baby girl was diagnosed at four months old. [Read More](/content/learn-more/journey-of-understanding-a-familys-experience-with-achondroplasia/index.html) ### Life with IgA Nephropathy: What to expect after diagnosis Life with IgA Nephropathy: What to expect after diagnosis [Read More](/content/learn-more/life-with-iga-nephropathy-what-to-expect-after-diagnosis/index.html) ### Navigating the Holidays with a Chronic Illness The first of November has sort of always been the mental marker for me to “up my game” for the Holiday Season. Pumpkin lattes and all things Gourd related are being shoved down our throats. I used to like Pumpkin Spice but now I think it’s safe to say the Pumpkin Craze has gone a bit overboard. Nevertheless I still have love for those that get suckered into the few months of insane commercialism and Seasonal Trends. [Read More](/content/learn-more/navigating-the-holidays-with-a-chronic-illness/index.html) ### Beyond the Diagnosis In October 2022, at the young age of 30, Rachel found herself facing a life-altering diagnosis. While most people her age were enjoying reaching the toddler phase of parenting, she was plunged into a world of uncertainty, fear, and guilt. Her husband, a dedicated United States Navy member, was about to embark on an extended sea duty, leaving her to navigate the turbulence of a cancer diagnosis with two young children by her side. [Read More](/content/learn-more/beyond-the-diagnosis/index.html) ### Top research tips from a medical professional and PicnicHealth study participant PicnicHealth community voices: what you need to know about joining clinical studies [Read More](/content/learn-more/top-research-tips-from-a-medical-professional-and-picnichealth-study-participant/index.html) ### A Letter to My Younger Self With Dwarfism 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. [Read More](/content/learn-more/a-letter-to-my-younger-self-with-dwarfism/index.html) ### When You're the Youngest Breast Cancer Patient Your Doctor's Ever Seen 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. [Read More](/content/learn-more/when-youre-the-youngest-breast-cancer-patient-your-doctors-ever-seen/index.html) ### It’s OK If You Don’t ‘Grow Bolder As You Grow Balder’ with Breast Cancer 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. [Read More](/content/learn-more/its-ok-if-you-dont-grow-bolder-as-you-grow-balder-with-breast-cancer/index.html) ### AAPI Heritage Month: Asian Representation and Inclusion in Research 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 results in a lack of knowledge about how particular medications and therapies affect AAPI people, potentially resulting in less effective or even hazardous medical interventions. [Read More](/content/learn-more/aapi-heritage-month-asian-representation-and-inclusion-in-research/index.html) ### My Journey with IgAN: Overcoming Challenges and Finding Support Sarah You is an IgAN Change Champion who has used her challenges with IgA nephropathy to help others. Sarah was diagnosed with IgAN when she was 21 years old, living as an international student in the US. She flew back to receive treatment and be with her family in Korea following her diagnosis. Now that she understands how to manage her IgAN, she has a master's degree in immunology and is currently applying to medical schools so she can be a support system for other rare disease patients. [Read More](/content/learn-more/living-with-igan-sarahs-story/index.html) ### I Learned Everything I Know About Wheelchairs on YouTube Sometimes, my experience with IBM leaves me feeling amazed at how hard it is to figure everything out. [Read More](/content/learn-more/i-learned-everything-i-know-about-wheelchairs-on-youtube/index.html) ### I Advocate Not Only For Melissa, But For All People With PA It’s important us PA parents keep using our voices to push for more research. [Read More](/content/learn-more/i-advocate-not-only-for-melissa-but-for-all-people-with-pa/index.html) ### ‘I Was Raised Reading Food Labels’ 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. [Read More](/content/learn-more/i-was-raised-reading-food-labels/index.html) ### 5 Alzheimer's Content Creators You Need to Follow 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. [Read More](/content/learn-more/alz-content-creator/index.html) ### Quinn Finds Joy in Everything Every milestone is so much bigger to us because he does things we thought alpha-mannosidosis might not ever allow him to do. [Read More](/content/learn-more/quinn-finds-joy-in-everything/index.html) ### Feeling More Me To me, having achondroplasia isn’t what makes me beautiful. It’s one part of my life. [Read More](/content/learn-more/feeling-more-me/index.html) ### The Truth About Growing Up With Fabry Disease I am just trying to be as honest as possible... Growing up having this disease has been pretty rough. [Read More](/content/learn-more/the-truth-about-growing-up-with-fabry-disease/index.html) ### ‘A Liver Transplant Is a Huge Freaking Deal’ 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. [Read More](/content/learn-more/a-liver-transplant-is-a-huge-freaking-deal/index.html)