FSHD Europe
The united European Voice for People with FSHD
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...
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,...
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