FSHD Europe – The European Voice for People with FSHD

  • The first two day workshop of the FSHD European Trial Network is in the books!
    FSHD Europe helped to organise the first FSHD European Trial Network online workshop on 23rd April and 7th May 2021 with the following aims: Establish the foundation of a European FSHD Trial Network Harmonise criteria for clinical and genetic diagnosis, for registries and outcome […]
  • FSHD Europe establishes European Trial Network
    FSHD Europe is proud to announce the establishment of the project “FSHD European Trial Network”. We have initiated and coordinated this project with Nicol Voermans, MD, PhD Neurologist as chair and Pascal Laforet, MD, PhD Neurologist as vice chair. George Padberg, MD, PhD and […]
  • UK FSHD patient registry publishes overview of ongoing clinical trials
    Ben Porter, curator of the UK FSHD Patient Registry, has published a visual overview of ongoing clinical trials for FSHD (type 1 and 2) worldwide. In addition to the already known Fulcrum Therapeutics trial, which is in clinical phase 2 and whose first results […]
  • Rare Disease Day – February 28, 2021
    As it is Rare Disease Day, we are very proud to announce that FSHD Europe has established the FSHD European Trial Network in close collaboration with a group of great experts led by Nicol Voermans (Radboudumc, Nijmegen) and Pascal Laforet (Hôpital Pitié-Salpêtrière, Paris). More […]
  • FSHD Europe is pleased to welcome another member to its Board!
    FSHD Italia, represented by Paola de Donato and Annalisa Alimandi is the newest member of FSHD Europe. We look forward to a successful collaboration with the Italian patient organisation to better represent the interests of people with FSHD across Europe.
  • Latest Research News – Events of the FSHD Society in late June/early July 2020
    by Sylvie Genet and Bine Haase The FSHD Society organised a few scientific as well as patient-oriented events from the end of June to the beginning of July. Due to the global situation caused by the Covid-19 pandemic, these conferences could not take place […]
  • An update on the impact of COVID-19 on the Fulcrum clinical trials
  • Information for people with FSHD regarding Covid-19
    fshdsociety.org/2020/03/10/fshd-and-covid-19/ Here are a few tips for people with neuromuscular diseases and what you may need to consider nationally (available in many different languages): https://www.enmc.org/covid-19-and-people-with-neuromuscular-disorders/
  • Dutch Guidelines of Care for FSHD patients and their families
    Dutch Guidelines of Care for FSHD patients and their families Take note:The following text offers a direct translation of the Dutch guidelines for care for FSHD patients and their families. The topics for these guidelines and the questions they raised were identified by a […]
  • FSHD International Patient Advocacy Summit
     (June 18th, Marseille, France) A European Patient Perspective The conference was sponsored by the FSH Society and jointly organized with FSHD Europe. It was attended by 38 delegates from Brazil, China, France, Germany, Italy, Israel, Japan, the Netherlands, Spain, UK and the USA.  More […]