FSH Society

Cause Area

  • Health & Medicine
  • People with Disabilities


450 Bedford StLexington, MA 02420 United States

Organization Information

Mission Statement

The FSH Society is a non-profit charity 501(c)(3) dedicated to accelerating treatments for facioscapulohumeral muscular dystrophy. Its role is to find treatments and a cure for FSHD while empowering our families. Its Vision is a world free of the suffering caused by FSH Muscular Dystrophy (FSHD).Our Strategies are to accelerate the development of treatments and a cure for FSHD, to increase, engage and empower our stakeholders, and aggressively leverage and expand resources to support our Mission Our Core Values Research | Community | Urgency


The FSH Society is the world's largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy. It has catalyzed major advancements and is 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 FSH Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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