Newsletters

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

 

Leaflets

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:

Leaflet

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?

 

Conference posters

Please find below relevant conference posters presenting the UK FSHD Patient Registry:

  • 29th Annual Congress of the World Muscle Society, Prague 2024
  • Myology 2024 / FSHD Society International Research Conference, 2024
  • FSHD Society International Research Conference, Milan 2023
  • Neuromuscular Translational Research Conference, UCL 2023
  • TREAT-NMD International Conference 2022 
  • FSHD Society International Research Conference 2022 (shortlisted for best poster award)
  • FSHD Society International Research Conference 2021
  • FSHD Society International Research Conference 2020

If you have any questions do not hesitate to contact the registry curator at [email protected]