About us​

FSHD Society

As long as we are here, no patient need ever face this disease alone. The FSHD Society is deeply committed to working with ingenuity and integrity to accelerate research leading to treatments by 2025 and eventually a cure. It is the generous support - gifts of time, talent, and treasure - from patients, families, friends, major donors, and sponsors, that make this imperative work possible.

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