Marion or the metamorphosis: a journey of self-reconstruction and hope in the face of FSHD
This Patients’ Forum centers on the testimonial of visual artist Marion Sellenet, who lives with facioscapulohumeral muscular dystrophy (FSHD).
In her film Marion or the metamorphosis, co-created with Laëtitia Moreau,
she documents her dual journey: coping with the physical manifestations of FSHD and overcoming a “second illness” of fear, despair, and stigma induced by the diagnosis. By relinquishing the hope of cure, she found
renewed meaning and a sense of wholeness, advocating for collaborative approaches that integrate medical, philosophical, and experiential knowledge. Her account is complemented by reflections from Alexandra Belayew, who underscores the importance of patient education and accessible communication of research; Baziel van Engelen, who highlights the need to bracket biomedical knowledge to address lived experience; and Ria de Haas and Nicol Voermans, who emphasize patient engagement in care and research. Together, these perspectives illustrate the transformative potential of patient narratives and underline the value of patient-centered, holistic approaches in 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...
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...
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We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.