About the Nonprofit
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The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. We have catalyzed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD. The FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone. The FSHD Society is deeply committed to working with ingenuity and integrity to accelerate research leading to treatments and a cure.
As one of the most prevalent forms of Muscular Dystrophy, FSHD affects an estimated 1 million people worldwide, including 200,000 in the United States. It is a devastating, progressive, muscle-wasting disease for which there is currently no treatment and no cure. But there is hope: research on the disease and therapy development are gaining momentum. We believe that with a coordinated effort, we will be able to deliver the first-ever disease-modifying treatment to FSHD families in few years.
