The FSH Society is solely dedicated to treating and curing FSHD through basic, translational and clinical research.

The FSHSociety is world's largest and most progressive grassroots network of facioscapulohumeral muscular dystrophy (FSHD) patients, their families and research activists. The FSH Society harnesses the power and insight of a patient-driven model, as it was founded on a promise between two research scientists with FSHD never to let the disease be forgotten or neglected.

1. Harnessing the power and insight of a patients

2. Raising awareness of, and advocacy for, the 3rd most prevalent form of Muscular Dystrophy

3. Empowering scientists by ensuring access to patients, resources and funds for FSHD research and developmen