CAH
Change Champion
Marc was diagnosed with congenital adrenal hyperplasia (CAH) at age 3 and has spent his life managing the condition with a strong routine and support system. From playing competitive sports to thriving in the startup world, Marc hasn’t let CAH hold him back. His involvement with the CAHtalog Registry reflects his commitment to advancing research and helping others in the CAH community navigate their own paths
Prepared for the 2 Percent
Marc’s journey with CAH shows his strength, family support, and how he overcomes challenges every day.
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.
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.