Today, March 19th, 2026, FSHD Europe announced its collaboration with TREAT-NMD and the PaLaDIn consortium to develop an FSHD disease model for health technology assessment (HTA), FSHD patient journey and patient advocacy toolkits. FSHD Europe strengthens its capacity...
Industry Update – Roche
Today, 19 March 2026, Roche announced that they have made the difficult decision not to advance emugrobart (an investigational anti-myostatin antibody, also known as GYM329) into Phase III development in FSHD. The decision to stop clinical activities for emugrobart in...
Official publication released on the results of the REACH study on Losmapimod
The full results of the international REACH study, a phase 3 clinical trial investigating the drug Losmapimod for FSHD, have recently been published. The study was conducted across nine countries and included a total of 260 participants with FSHD1 or FSHD2. Purpose of...
One in 10,000
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...