FSHD Europe – The European Voice for People with FSHD

News

  • ENMC international workshop on FSHD – reports are online
    The report of both ENMC workshops are now available online and can be read/downloaded here:268th ENMC workshop – Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): Relevance for clinical trials – ScienceDirect 265th ENMC International Workshop: Muscle imaging in […]
  • FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023
                                              FSHD European Trial Network Newsletter 3 – March 2023 The FSHD ETN is pleased to send you this newsletter to update you on […]
  • FSHD European Patient Survey – Lay Report published!
    It’s RareDiseaseDay and FSHD Europe is happy to announce, that the FSHD European Patient Survey lay report is published and can be found along a few other informations here! Thanks to over 1.000 participants from over 26 countries in Europe it was a big […]
  • Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials
    From 30th September-02nd October 2022 the  268th 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 (🇳🇱Dutch, 🇫🇷French, 🇩🇪German, 🇪🇸Spanish).
  • Roche and Genentech start MANOEUVRE – an new global phase 2 study of GYM329
    MANOEUVRE: a new global Phase 2 study to begin by the end of the yearMANOEUVRE is a new global Phase 2 clinical study that aims to evaluate the pharmacodynamics, safety, tolerability, pharmacokinetics and efficacy of GYM329 (RO7204239), an investigational anti-myostatin antibody targeting muscle growth, […]
  • FSHD European Patient Survey – A big THANK YOU to all participants
    Thank you to everyone who responded to the FSHD European Patient Survey!We had over 1100 respondents from 26 European countries, which is a fantastic response.The survey showed what motivates people to participate in clinical trials, and what would put them off taking part. It […]
  • 20th June 2022 is World FSHD Day!
    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 […]
  • Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials
    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!
    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 […]
  • Update and News regarding the Patient Pharma Survey!
    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 […]