Category: News

European FSHD patient survey launched!

April 15, 2022 By Bine Haase

UPDATE! Over 900 people with FSHD and/or their caregivers/relatives have completed this important survey across Europe so far!Take your chance to give your opinion so that future clinical trials can be better planned, developed and conducted. The survey is open for participation until 9 May 2022. An important study between FSHD Europe and the John […]

Update and News regarding the Patient Pharma Survey!

March 8, 2022 By Bine Haase

The important Patient Preference study that we have recently announced between FSHD Europe and the John Walton Muscular Dystrophy Research Centre (JWMDRC) at Newcastle University is nearly ready to be published all around Europe. As you may be aware, there is a growing interest from several pharma companies to run clinical trials in FSHD in […]

Annual General Assembly – 20.09.2021 (online)

September 27, 2021 By Bine Haase

Here are the minutes from FSHD Europe’s last Annual General Assembly. Annual General Assembly 2021/2022 (online)20th September 2021 Reminder: our statutes  Members Organisation Represented by FSHD patient group Spierziekten Nederland Diana van der Meij-Kim, Marieke Verbij MDUK Sheila Hawkins, Liz Williams FSHD Spain Maria Vriens-Munoz Bravo, Maria Gómez-Rodulfo FSHD Italia Annalisa Alimandi, Paola de Donato […]

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 […]