Your doctor can order a genetic test for FSHD. Before seeking a test, consult a genetic counselor to make sure you fully understand the process and have considered how you […]
Genetic Testing
Health tips
FSHD is highly variable, even among affected family members. Each person is possesses a unique combination of genetic and environmental factors that influence his or her body and health. […]
From the Wayback Machine, 2010
[…] a good Samaritan finds the treasure and returns it. That’s what happened recently when long-time FSHD Society member Don Burke was updating the Wikipedia page on Facioscapulohumeral muscular dystrophy and […]
Gathering Place
No one should have to walk the FSHD journey alone and there can be great strength in shared experiences. With this in mind, the FSHD Society, in partnership with amazing […]
Advocacy
It is crucial that FSHD voices are heard. By engaging with elected officials, regulatory agencies, and government offices, we can make a big difference in getting treatments to families faster. […]