UK FSHD Patient Registry

To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD.

• Please read the registration user guide for step-by-step instructions on registering yourself or someone you care for as a UK based FSHD patient.
• More information for participants and their families 
• More information for professional users

There are currently 965 patients registered in this database.

The registry is funded by  Muscular Dystrophy UK with support from the John Walton Muscular Dystrophy Research Centre,  TREAT-NMD Alliance and MRC Centre for Neuromuscular Disease.

Coordinated by:

Funded by:

Affiliated to: