FSHD Europe
The united European Voice for People with FSHD
FSHD Connect Europe Brings Together Community
This event created a unique opportunity for patients, families, and healthcare professionals to share knowledge, exchange experiences, connect and build lasting relationships. The atmosphere was one of solidarity, openness, and mutual respect, offering participants a space not only to learn but also to feel seen and heard.
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
Avidity Biosciences Investor & Analyst Event: FORTITUDE™ Topline Data and Regulatory Updates for del-brax in FSHD
Avidity announced topline data in the del-brax program demonstrating consistent improvement across multiple functional measures compared to placebo. Data will be presented at the 32nd Annual FSHD Society International Research Congress (IRC) in Amsterdam. More...
Finnish Guts and Hope – On Resilience, Science, and Progress in FSHD
Founded in 2024, FSHD Finland is internationally oriented and actively engaged in networking, peer support, and knowledge sharing. Board members Lauri Pirinen and Lora Chun are also involved with FSHD Europe. Together with Rami Jokinen, author of the article,...
Webinar: Strength Training and FSHD – What Works and What to Watch Out For
Staying active with FSHD can be challenging. Many patients wonder how to move safely without overworking their muscles. In an upcoming FSHD University webinar, we’ll explore the role of strength training and how it can support mobility, daily function, and overall well-being.
Dr. Nicole Voet, rehabilitation physician, and Ronne van Haaren, physical therapist at the Dutch Center for Neuromuscular Diseases, will share insights from their latest research on strength training in people with FSHD.
During the webinar, you’ll receive practical advice, learn about the potential benefits of strength training, and discover what to keep in mind when incorporating exercise into your daily routine. The goal: to help you move with more confidence and care.
Highlights of the activities driven by FSHD Spain on World FSHD Day
On World FSHD Day, FSHD Spain organized and promoted a series of impactful activities to raise awareness about facioscapulohumeral muscular dystrophy across the country: • Interview to two young Spanish attendees to the recent FSHD Connect conference published on a...
Italy Lights Up for World FSHD Day 2025
On June 20, Italy once again joined the global FSHD community in marking World FSHD Day with an impactful mix of public awareness and community engagement. Iconic landmarks across the country lit up in orange—the color of hope and energy for the FSHD community—including the Colosseum, Palazzo Chigi, Palazzo Madama, Montecitorio in Rome, and the Maschio Angioino in Naples. The initiative aimed to shine a light—literally and symbolically—on facioscapulohumeral muscular dystrophy (FSHD), one of the most common forms of muscular dystrophy.
The Dutch FSHD Foundation is pleased to share some exciting news.
In recent years, Professor Nicol Voermans has dedicated significant time and energy to FSHD Europe and the FSHD European Trial Network (ETN). She is also a key contributor to the Global Task Force of Project Mercury—a unique international working group that brings...
The VI FSHD SPAIN Congress was a great success!
The VI FSHD SPAIN Congress, held in Madrid on April 4 and 5, marked a significant success for the FSHD community. With 130 attendees, it represented a notable increase in participation compared to 82 attendees in Valencia in 2024. Another great success was the...
Join Us!
We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.