We’ve made a profile picture frame for the upcoming World FSHD Day that anyone who wants to participate can use to “beautify” their profile picture on Facebook, Twitter, Instagram, LinkedIn and other social media platforms and hopefully raise awareness about FSHD and people living […]
From 22-24th April 2022 the 265th ENMC International Workshop took place in Hoofddorp, The Netherlands. The lay report is online and can be read here (🇬🇧English) and is also available for download in various other languages (🇩🇰Danish, 🇳🇱Dutch, 🇫🇷French, 🇩🇪German, 🇮🇹Italian, 🇵🇱Polish, 🇪🇸Spanish)
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 […]
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 […]
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 […]
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 […]
