FSHD European Trial Network Newsletter 4 – February 2024 Dear all,The FSHD ETN hopes that you have made a good start of 2024!! We are very pleased with the steps already taken and work that has been done, here we give you a short update on our activities and plans for this year. Update of […]
While FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have a significant positive benefit. She encourages everyone with FSHD to do what they can to be as healthy and “trial fit” as possible. Dr. Voermans is Professor of Muscular […]
We are pleased to announce the appointment of Ria de Haas as Project Manager for bothFSHD Europe and the FSHD European Trial Network. She can be contacted at ria@fshd-europe.info
At the beginning of December the Global Taskforce Meeting of Project Mercury took place in Boston in the US. Representing FSHD Europe Kees van der Graaf was one of the 20 participants attending the meeting in person, among them also Miriam Wagner-Long, the liaison and project manager for all European countries and as one of […]
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, […]
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 Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials. 22–24 April 2022, […]
FSHD European Trial Network Newsletter 3 – March 2023 The FSHD ETN is pleased to send you this newsletter to update you on the steps taken and to look forward to strengthen our collaboration […]
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).
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)
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 […]