News

  • 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, in individuals living with FSHD.As there are currently no approved treatments […]
  • 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 also has shown what patients see as important results from clinical […]
  • 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 with this rare condition. Here are the instructions:1. click on this […]
  • 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 May 2022. An important study between FSHD Europe and the John […]
  • 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 from several pharma companies to run clinical trials in FSHD in […]
  • Fulcrum Therapeutics® Announces Phase 3 Clinical Trial of Losmapimo (REACH)
    https://ir.fulcrumtx.com/news-releases/news-release-details/fulcrum-therapeuticsr-announces-reach-phase-3-clinical-trial/?fbclid=IwAR2WpAYsthlB2it094PMDEGP9b671YY5pKh7vQSgU10IEc5vxzHqMIu5rj4
  • FSHD European Trial Network (FSHD ETN) Newsletter 2 – January 2022
                                              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 […]
  • What do FSHD Muscular Dystrophy Patients in Europe want from Clinical Trials?
    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 […]