Category: News

20th June 2022 is World FSHD Day!

June 19, 2022 By Bine Haase

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 with this rare condition. Here are the instructions:1. click on this […]

Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials

June 14, 2022 By Bine Haase

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)

European FSHD patient survey launched!

April 15, 2022 By Bine Haase

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 […]

Update and News regarding the Patient Pharma Survey!

March 8, 2022 By Bine Haase

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 […]

Annual General Assembly – 20.09.2021 (online)

September 27, 2021 By Bine Haase

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 […]