FSHD Europe
The united European Voice for People with FSHD
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.
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