Category: FSHD European Trial Network

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, […]

ENMC international workshop on FSHD – reports are online

April 26, 2023 By Bine Haase

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, […]

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).

Muscle Imaging in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trials

June 14, 2022 By Bine Haase

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)

The first two day workshop of the FSHD European Trial Network is in the books!

May 10, 2021 By Bine Haase

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 […]