The FSHD Society is the world’s largest advocacy and research organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.

Our Promise: No one should face FSHD alone. The FSHD Society is dedicated to accelerating research toward treatments and a cure while supporting individuals and families every day. This vital work is made possible through the generosity of our community—patients, families, volunteers, and donors who share our vision of a world without FSHD.

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

Our Core Values: Research | Community | Urgency