UPDATE! Over 900 people with FSHD and/or their caregivers/relatives have completed this important survey across Europe so far!Take your chance to give your opinion so that future clinical trials can be better planned, developed and conducted. The survey is open for participation until 9 May 2022. An important study between FSHD Europe and the John […]
The important Patient Preference study that we have recently announced between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University is nearly ready to be published all around Europe. As you may be aware, there is a growing interest from several pharma companies to run clinical trials in FSHD in […]
https://ir.fulcrumtx.com/news-releases/news-release-details/fulcrum-therapeuticsr-announces-reach-phase-3-clinical-trial/?fbclid=IwAR2WpAYsthlB2it094PMDEGP9b671YY5pKh7vQSgU10IEc5vxzHqMIu5rj4
FSHD European Trial Network The FSHD ETN wishes you a very healthy and inspiring 2022! We are very pleased with the steps taken and look forward to strengthen our collaboration in 2022! We here […]
FSHD Europe has commissioned this piece of work which will discover, define and describe what matters to more than 80,000 people living with FSHD across Europe in designing and delivering clinical trials. We want to encourage people with FSHD to participate in and benefit from clinical trials and this will ensure that trials are designed […]
Here are the minutes from FSHD Europe’s last Annual General Assembly. Annual General Assembly 2021/2022 (online)20th September 2021 Reminder: our statutes Members Organisation Represented by FSHD patient group Spierziekten Nederland Diana van der Meij-Kim, Marieke Verbij MDUK Sheila Hawkins, Liz Williams FSHD Spain Maria Vriens-Munoz Bravo, Maria Gómez-Rodulfo FSHD Italia Annalisa Alimandi, Paola de Donato […]
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 […]