Category: Events

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 […]

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.

FSHD International Patient Advocacy Summit

December 12, 2019 By Bine Haase

 (June 18th, Marseille, France) A European Patient Perspective The conference was sponsored by the FSH Society and jointly organized with FSHD Europe. It was attended by 38 delegates from Brazil, China, France, Germany, Italy, Israel, Japan, the Netherlands, Spain, UK and the USA.  More than half of the delegates were patients and family members, some […]

FSH Society meeting

December 12, 2019 By Bine Haase

 (June 8-10, Las Vegas, USA) The FSH Society meeting in Las Vegas this year consisted of two separate meetings: International Research Congress & Research Planning June 8-9th (mainly for doctors and researchers) The FSH Society’s International Network Meeting for FSHD Families, Clinicians, and Researchers (mainly for patients and their families) The conference was attended by […]


December 12, 2019 By Bine Haase

By Fabiola M. Bertinotti & Bine Haase, Board members of FSHD EUROPE.  It is somewhat difficult to substantiate in a few lines what we think and can feedback about EURORDIS per se and the Summer School we attended in Barcelona from June 11 through 15. Nevertheless, we will try to contain our enthusiasm, streamline our […]

The Euro-Russian Myology Course

December 12, 2019 By Bine Haase

 (May 16-19, Moscow, Russia) Attendees: round 200 professionals, mostly doctors, but also researchers, representatives of pharmaceutical companies and patients organizations. In April 2018 I got an unexpected invitation to make a presentation about FSHD for a group of (mainly) Russian doctors during a Myology Course that was going to take place in Moscow in May. […]