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FSHD Society


450 Bedford Street
Lexington, MA 2420



Email Address

[email protected]


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. The FSHD Society is a voluntary, non-profit organization with a mission to find treatments and a cure for FSHD while empowering families that have been impacted.

FSHD is a rare inherited muscle disease the main effect of which is progressive weakening and loss of skeletal muscle. The FSHD Society has catalyzed major advancements and is working to accelerate the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

Established in 1989, the FSHD Society now has chapters across the US that are working to accelerate the development of treatments and a cure for FSHD. They seek to increase, engage, and empower all who have been impacted by FSHD. The FSHD Society continues to transform the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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