FSHD Spain filmed and released a commercial, directed by the prestigious film director Chus Gutierrez, to raise awareness of FSHD, a rare, neurodegenerative, genetic disease that causes progressive weakness of skeletal muscle. This powerful video shows a strong...
A toolkit for new facioscapulohumeral muscular dystrophy trial sites
We are pleased to announce our newly published paper that offers practical guidance from international trial networks and site experience, providing a roadmap to help inexperienced sites qualify for upcoming clinical trials.
Since, numerous potential treatments are being developed for FSHD, clinical trial readiness is key. Project Mercury and global collaborations are working to overcome barriers to delivering effective FSHD therapies as numerous potential treatments are developed.
Thank you to Lawrence Korngut, Joost Kools, Nicol Voermans and all co-authors.
Read full paper here: Toolkit-for-new-facioscapulohumeral-muscular-dystrophy-trial-sites
FSHD Drug development – Industry Updates
FSHD is one of the most common forms of muscular dystrophy, yet there is currently no approved treatment. Across the world, many companies are working hard to develop effective therapies for people living with FSHD. Two industry partners shared an update on...
Welcome APN Portugal – New Member of FSHD Europe
FSHD Europe is delighted to announce that APN (Associação Portuguesa de Neuromusculares) has officially joined our network as a new member!
About APN, Portugal
Established in 1992 APN supports individuals with neuromuscular conditions across Portugal. Their mission is ‘To create better living conditions for people with neuromuscular diseases, along with their families and caregivers.’. This includes promoting their rights, providing material, moral, and technical support, and ensuring easier access to homes and public places.
2 Medals for Gergő Gigacz at World Boccia Challenger
Have you ever heard of Boccia? We have! Gergő Gigacz from Hungary won 2 medals at the World Boccia Challenger in Olbia. An incredible achievement. Congrats, Gergő from all of your fans. Hajrá Boccia! Hungarian Teen Sensation Shines at World Boccia Challenger in Olbia...
Are you a patient or caregiver with lived experience of FSHD and interested in contributing?
Applications are now open to join the PaLaDIn Patient and Caregiver User Group (PCUG). TREAT-NMD is currently working as part of project PaLaDIn to develop a platform called the Interactium® that will allow registries to overcome the significant challenges of...
Novartis agrees to acquire Avidity Biosciences
Novartis has announced an agreement to acquire Avidity Biosciences, which will add three promising late-stage programs, including FSHD, to its neuroscience pipeline. FSHD Europe appreciates Avidity’s pioneering contributions in advancing FSHD research and values the...
Marion Sellenet, a beautiful and personal movie about life with FSHD
French artist and filmmaker Marion Sellenet, in collaboration with director Laëtitia Moreau, has released the movie/documentary Marion ou la métamorphose. This deeply personal and poetic film tells Sellenet’s own story as a woman living with FSHD, a rare and incurable...
In Memoriam: Daniel Perez, Co-Founder of the FSHD Society
It is with deep sadness that we share the passing of Daniel Perez, co-founder of the FSHD Society in the United States. Daniel was a visionary and tireless advocate for people living with FSHD. Living with the condition himself, he co-founded the FSHD Society in...
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,...
SingelSwim, The Netherlands raises nearly € 70,000!
Swimming, paddleboarding, canoeing or walking for research On September 14, 2025, the annual SingelSwim took place once again in Utrecht. A record number of 360 participants swam or paddleboarded distances ranging from 0.5 to 5.5 kilometers. Through their efforts,...
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.