FSHD European Trial Network

EURO-NMD is pleased to announce the establishment of the “FSHD European Trial Network”. Nicol Voermans as chair and Pascal Laforet as vice chair; George Padberg and Baziel van Engelen as advisors coordinate this project, initiated by FSHD Europe.
The primary goal of the FSHD European Trial Network is to connect the clinicians involved in care for FSHD in all European countries and increase the trial capacity in Europe allowing more centres to participate in upcoming trials and making new treatments widely accessible to patients.

News

• FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023March 9, 2023
                                            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 […]
• Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsOctober 17, 2022
  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).
• Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsJune 14, 2022
  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 (FSHD ETN) Newsletter 2 – January 2022January 7, 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 […]
• The first two day workshop of the FSHD European Trial Network is in the books!May 10, 2021
  FSHD Europe helped to organise the first FSHD European Trial Network online workshop on 23rd April and 7th May 2021 with the following aims: Establish the foundation of a European FSHD Trial Network Harmonise criteria for clinical and genetic diagnosis, for registries and outcome measures Create exchange of clinical experience and genetic reference material Bring […]