A Powerful First: FSHD Connect Europe Brings Together Community Across Borders
By Ria de Haas, FSHD Europe
FSHD Europe proudly hosted the first edition of FSHD Connect Europe, an event that marked a significant milestone for the European FSHD community. The meeting brought together 200 participants, patients, family members and caregivers, from 25 countries across Europe and beyond.
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.
One of the most powerful highlights of the event was the screening of ‘Marion ou la métamorphose’, a moving film by visual artist Marion Sellenet, who lives in Brussels and was diagnosed with FSHD at the age of 15. While she gradually loses muscle function, a deeper metamorphosis takes place in her: the perception of what she once saw as a disaster becomes an opportunity to reinvent herself and discover another art of healing. This powerful film is now available all over the world: Watch Marion or the metamorphosis Online | Vimeo On Demand on Vimeo.
The programme featured a broad range of topics reflecting the diverse needs and interests of the FSHD community, including living with FSHD, international care guidelines, family planning, genetics, empowering mobility, physical therapy, energy self-management and clinical trial readiness.
We also took a special moment to acknowledge the farewell of June Kinoshita. We are deeply grateful for her many years of dedication to the global FSHD community, and we will truly miss her warm and generous spirit.
For those who wish to rewatch the presentations, all recordings and photos can now be accessed online. Please visit FSHD Connect Europe – FSHD Europe to view them.
FSHD Europe would like to thank our generous sponsors, inspiring speakers, dedicated volunteers, and enthusiastic participants. Your support and energy made this event a true success. We are especially grateful to the FSHD Society for their help and support.
We are proud of what we have achieved together—and even prouder to be part of such a strong, united global FSHD community.
If you captured special moments during the weekend that you’re happy to share, please send them to us. With your permission, we may feature them on our website and social media channels to help showcase the energy and spirit of the event. You can email your photos to secretariat@fshd-europe.info.
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...
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...
EURO-NMD Webinar series on FSHD Now available online!
This May, EURO-NMD hosted a dedicated 4-episode webinar series on FSHD. These engaging online sessions offered valuable insights into the latest developments and research on FSHD. Each webinar focused on a key topic: Genetic Diagnosis of FSHD by Prof. Emiliano...
Summer School on Multidisciplinary Management of Neuromuscular Diseases
The second edition of the Summer School on Multidisciplinary Management of Neuromuscular Diseases, co-organized by the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) and the French network of expertise on NMDs (FILNEMUS) is scheduled for 24...
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.