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FSHD Society @[email protected]

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Our Promise As long as we are here, no patient need ever fac


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Our Promise
As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSHD Society will keep working to accelerate research leading to treatments by 2025 and eventually a cure.

Our Vision: A world free of the suffering caused by FSH Muscular Dystrophy (FSHD)

Our Mission: Find treatments and a cure for FSHD while empowering our families

Our Core Values: Research | Community | Urgency

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 world.