Author: Bine Haase

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 […]

Rare Disease Day – February 28, 2021

February 27, 2021 By Bine Haase

As it is Rare Disease Day, we are very proud to announce that FSHD Europe has established the FSHD European Trial Network in close collaboration with a group of great experts led by Nicol Voermans (Radboudumc, Nijmegen) and Pascal Laforet (Hôpital Pitié-Salpêtrière, Paris). More information coming soon.