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 […]
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, […]
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 […]
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).
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 […]
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 […]
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 […]
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)
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 […]
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 […]