This World Rare Disease Day, Global Genes, a leading rare disease patient advocacy organization, is proud to debut the new film, Finding Hope: A Rare Disease Community Comes Together.
This documentary chronicles the aHUS Orlando Adventure, a first-of-its-kind national child and teen meeting for this rare disease community. aTypical Hemolytic Uremic Syndrome (aHUS) is a rare, life-threatening disease that primarily affects the kidneys.
Throughout the weekend Adventure, children engage with a leading physician and social worker, learn about living with and managing their disease, and are mentored by young adults from the community who understand what they are facing.
Parents and guardians formed lasting bonds as well, participating a separate program tailored to caregivers. Most importantly, the kids developed life-long friendships, gained independence and had a blast just being kids!
Helping rare disease patients, caregivers and families connect and support each other is central to the Global Genes mission – to eliminate the challenges of rare disease. This film illustrates the heart of that mission and why it is so essential to bring the rare community together, to empower patients, and to share hope.
This five-minute documentary is produced by Difference Diaries, a nonprofit that is dedicated to giving voice to young adults with defining differences and made possible by an educational grant from Alexion Pharmaceuticals.