PNH
Change Champion
Hi! I am Erin Fortin; I'm 28 years old from Long Island, NY and was diagnosed with PNH in 2019. I enjoy being involved in the PNH community and meeting other patients through various advocacy work I've been grateful to participate in. Besides PNH, I enjoy spending time with my 10 month old daughter, husband, family and friends, drawing, and making stickers for my Etsy Shop!
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.