FSHD Europe
The united European Voice for People with FSHD
NEW date: FSHD Connect Europe patient meeting 2025
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. Attendees will be informed about the latest research, drug development, and clinical trials, as well as managing symptoms and improving quality of life. It is a great opportunity to connect with other patients and families across Europe. More details will follow early 2025 on our website and in our newsletter. We hope to see you there!
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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 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”
Global Task Force Meeting
FSHD Europe is privileged to be part of Project Mercury which is a global patient-led initiative with the primary goal of speeding up the delivery of new therapies for FSHD.
Over the weekend Ria de Haas and Nicol Voermans participated in the Global Task Force Meeting representing FSHD Europe/ FSHD European Trial Network. It’s amazing to see the work and progress being made by working together globally! Thank you everyone for this productive and inspiring time together in Barcelona!
More info: https://lnkd.in/deZHheJV
FSHD Europe/ FSHD European Trial Network, FSHD Society, FSHD Global Research Foundation, FSHD SPAIN, Lumiio Inc., AFM-Téléthon
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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.