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 4 – February 2024FSHD 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… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 4 – February 2024
- FSHD University webinar featuring FSHD ETN chair Dr. Nicol VoermansWhile 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… Read more: FSHD University webinar featuring FSHD ETN chair Dr. Nicol Voermans
- A big welcome to our new Project Manager!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
- Project Mercury – Global Taskforce Meeting 9th December 2023, Boston (USA)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… Read more: Project Mercury – Global Taskforce Meeting 9th December 2023, Boston (USA)
- Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHDFSHD 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,… Read more: Project Mercury launched – The Global Initiative to Speed the Delivery of Therapies for FSHD
- ENMC international workshop on FSHD – reports are onlineThe 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,… Read more: ENMC international workshop on FSHD – reports are online
- FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023FSHD 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… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 3 – March 2023
- Genetic diagnosis, clinical classification, outcome measures, and biomarkers in Facioscapulohumeral Muscular Dystrophy (FSHD): relevance for clinical trialsFrom 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 trialsFrom 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 2022FSHD 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… Read more: FSHD European Trial Network (FSHD ETN) Newsletter 2 – January 2022
- The first two day workshop of the FSHD European Trial Network is in the books!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… Read more: The first two day workshop of the FSHD European Trial Network is in the books!
- FSHD Europe establishes European Trial NetworkFSHD Europe is proud to announce the establishment of the project “FSHD European Trial Network”. We have initiated and coordinated this project with Nicol Voermans, MD, PhD Neurologist as chair and Pascal Laforet, MD, PhD Neurologist as vice chair. George Padberg, MD, PhD and Baziel van Engelen, MD, PhD are the advisors.FSHD Europe has taken… Read more: FSHD Europe establishes European Trial Network