FSHD Society

The FSHD Society is the world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. We are solely dedicated to treating and curing FSHD through basic, translational and clinical research. We empower scientists by ensuring access to patients, resources and funds for FSHD research and development. The FSHD Society empowers patients by ensuring them a voice to convey what it is like to live with muscular dystrophy. We engage and support tens of thousands of patients and their families and friends in thousands of communities worldwide. FSHD is one of the nine primary types of muscular dystrophy, with a major symptom of the progressive weakening and loss of skeletal muscles.

Charity Navigator Ratings

Overall Rating

(4/4)|91.14 Score


(3/4)|87.48 Score

Accountability & Transparency

(4/4)|100 Score



Headquarter Address

450 Bedford Street
Lexington, MA 02420