Ceridwen Hughes created a “The Rare Project” ― a series of photos and stories of kids with rare diseases. “I also wanted to inject some beau

When the Bragg family learned their daughter, Clara had GM1, a rare Lysosomal Storage Disease they, like many parents with children with rar

Uplifting Athletes, a nonprofit organization, aimed at inspiring hope for the rare disease community through sport, has a national network o

Vertex is a global biotechnical company that focuses on developing and commercializing medicines to aid people with serious diseases to lead