FSHD Europe
The united European Voice for People with FSHD
FSHD Connect Europe 2025 register now!
FSHD Europe, in collaboration with the FSHD Society, is excited to announce the first FSHD Connect Europe meeting, taking place from June 13th to June 15th 2025 in Amsterdam, The Netherlands.
This exclusive event brings together FSHD patients and their families, clinicians, and researchers. It is a unique opportunity to connect, share experiences and building lasting connections.
Don’t miss out on this exceptional opportunity to be part of the FSHD
community’s growth! Spaces are limited, so register early to secure your spot.
Join us at the FSHD Connect Europe Meeting in Amsterdam, June 13th – June 15th, 2025!
For more details about the FSHD Connect Europe Meeting, including the program, event information, location, and registration, please visit our registration website. Here, you can also reserve your hotel and secure your spot.
Get all the details you need to make the most of this exciting event.
We look forward to welcoming you in Amsterdam!
FSHD European Trial Network (ETN)
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 & articles
FSHD Connect Europe 2025 register now!
Join us at the FSHD Connect Europe Meeting in Amsterdam, June 13th – June 15th, 2025!
For more details about the FSHD Connect Europe Meeting, including the program, event information, location, and registration, please visit our registration website. Here, you can also reserve your hotel and secure your spot.
Get all the details you need to make the most of this exciting event.
We look forward to welcoming you in Amsterdam!
FSHD Italia at the XXXI Marcello Campobasso Trophy
The Royal Yacht Club Canottieri Savoia in Naples has accepted to help FSHD Italia APS to spread the knowledge regarding FSHD. The Savoia yacht club is an historical sailing club and frequently organizes international regattas.
“Marion or the metamorphosis” A film by Laëtitia Moreau & Marion Sellenet
“Marion or the metamorphosis” A film by Laëtitia Moreau & Marion Sellenet
Marion is 35 years old. A visual artist from the Cévennes who lives in Brussels, she was 15 when she was diagnosed with FSHD.
As she gradually loses her muscles, a deeper metamorphosis takes place within her: the perception of what she has experienced so far as a disaster becomes an opportunity to reinvent herself and discover a new art of healing. A true hymn to life”
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We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.