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 measures Create exchange of clinical experience and genetic reference material Bring […]
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 Baziel van Engelen, MD, PhD are the advisors.FSHD Europe has taken […]
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 are expected in the middle of the year, you will also […]
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 information coming soon.
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.
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 in Washington D.C. as originally planned and were converted to a […]
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/