FSHD Europe – The European Voice for People with FSHD
News
- FSHD Society – Webinar on the FSHD European Patient SurveyFSHD Society‘s regular webinar series “FSHD University” welcomes Megan McNiff from the John Walton Muscular Dystrophy Research Centre at Newcastle University (UK) in next Thursday‘s event, who will give a presentation on the FSHD European Patient Survey and answer questions afterwards.If you are interested,… Read more: FSHD Society – Webinar on the FSHD European Patient Survey
- Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHDFSHD Europe and the FSHD European Trial Network is pleased to be a part of Project Mercury – a global collaboration seeking to speed the delivery of treatments to people living with FSHD. Within Europe this will mean: Taken together this will mean more… Read more: Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHD
- ENMC international workshop on FSHD – reports are onlineThe 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… Read more: ENMC international workshop on FSHD – reports are online
- FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023FSHD European Trial Network Newsletter 3 – March 2023 The FSHD ETN is pleased to send you this newsletter to update you on… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023
- 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… Read more: FSHD European Patient Survey – Lay Report published!
- Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsFrom 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 GYM329MANOEUVRE: 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,… Read more: Roche and Genentech start MANOEUVRE – an new global phase 2 study of GYM329
- FSHD European Patient Survey – A big THANK YOU to all participantsThank 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… Read more: FSHD European Patient Survey – A big THANK YOU to all participants
- 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… Read more: 20th June 2022 is World FSHD Day!
- Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsFrom 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)