FSHD Europe
The united European Voice for People with FSHD
FSHD Connect Europe 2025
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. Registration is closed. Do you have a registration code? Use it to still register.
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
‘Cure FDHD’ Clinical Trial Passport Program
Discover how the ‘Cure FSHD’ Clinical Trial Passport Program, an initiative of the FSHD Global Research Foundation, is supporting those living with FSHD. In this video, Leona and Jean-Paul share their personal stories of living with Facioscapulohumeral Muscular Dystrophy (FSHD) and explain how the program has provided vital support in their clinical trial journeys. Learn more about this groundbreaking initiative and how it’s helping individuals with FSHD take proactive steps toward treatment.
International call for FSHD research projects
AMIS FSH, a French patient association, and member of FSHD Europe, is inviting international applications for research projects focused on innovative, high-risk/high-reward, and high-impact studies. The call supports fundamental or translational research, with a total funding pool of 60,000 euros for 2025. Each project can receive up to 25,000 euros per year and may run for a maximum of two years.
Young Investigator Award
FSHD Society invites you to submit nominations for the Young Investigator Award which recognizes a junior researcher who shows exceptional promise. Qualifications for nominations may include any postdoctoral trainees, clinical fellows, and junior faculty establishing their first independent laboratory (less than 5 years),
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