The UK FSHD Patient Registry
To help advance the research and development of treatment, therapies, and care for all those diagnosed with Facioscapulohumeral dystrophy (FSHD).
New & improved registry coming soon!
To express interest in joining the registry, please complete this short form.
Existing participants will be contacted by email very soon.
To learn about how we support UK based FSHD patients, doctors and researchers, please view our registry leaflet and the information pages in the menu on your left.
The registry is supported by the UK charities Muscular Dystrophy UK and FSHD UK, and participates in global networks and initiatives including TREAT-NMD and World FSHD Day.
Coordinated by:
Supported by:
Affiliated with:
