The FSHD Society is the largest network of patients, families, clinicians, researchers and friends - all advocating for FSH Muscular Dystrophy.


Activating the FSHD Community is essential to progress. YOU are the driving force that enables the FSHD Society to support & empower families and to fund groundbreaking research to find treatments and a cure!
Find Your Local Chapter
There is great power in community. Led by volunteers and supported by FSHD Society staff, the Chapter Program is our greatest opportunity to fund more research, connect more patients, and advance more progress.
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day.
Ask your doctor
Since 2018, the international medical system has had a unique code (G71.02) for FSHD muscular dystrophy. Please ask your medical provider to add the code to your medical record. This enables researchers to analyze data on the public health impact of FSHD.