Cystinosis Foundation
The Cystinosis Foundation, established in 1983 by Jean Hobbs Hotz, is dedicated to supporting families affected by cystinosis, a rare genetic disorder. Through her vision, the foundation has fostered a global community by uniting patients, families, researchers, and healthcare professionals to advance understanding and treatment of the disease.
Jean's tireless efforts transformed the landscape for cystinosis awareness and support, creating the first cystinosis support group and organizing annual conferences that brought together individuals from around the world. Her legacy of compassion and dedication continues to inspire the community as they work towards a cure, embodying the belief that one person can indeed make a difference.
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