You will be able to find copies of all published UK FSHD Patient Registry newsletters in this section. 


An information leaflet has been produced to help explain what the UK FSHD Patient Registry is about and how to register. You can show this to your family and friends and to your doctor if they would like more information. The leafet about the Registry is available to download here:


You can also find a leaflet about the benefits to joining a registry, including examples of how the registries coordinated at the John Walton Muscular Dystrophy Research Centre have been used in research and in clinical trials. The leaflet is available to download here:

Why join a patient registry?