Category: News

FSHD Society – Webinar on the FSHD European Patient Survey

August 22, 2023 By Bine Haase

FSHD 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, you can register hereFSHD University – FSHD Experiences: Insights from Europe24 […]

Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHD

June 23, 2023 By Bine Haase

FSHD 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 European patients involved in more clinical trials in different European countries, […]

FSHD European Patient Survey – Lay Report published!

February 28, 2023 By Bine Haase

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 success and should help hugely in the development of future clinical […]

Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials

October 17, 2022 By Bine Haase

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

October 4, 2022 By Bine Haase

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

September 10, 2022 By Bine Haase

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 […]