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).
The UK Patient Registry has now relaunched!
Register or login below to share your experiences of living with FSHD.
If you’re not sure whether you are eligible, or would like additional support, please complete this contact form instead.
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.
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