News

Enhance Your Site’s Visibility: Register with the Clinical Trial Site Registry
The Care and Trial Site Registry (CTSR) is a valuable online platform aimed at advancing clinical research in neuromuscular diseases. By enrolling your site in the CTSR, you become part of a global network of specialized centers, which enhances your site’s visibility to researchers, industry partners, and patients. This increased exposure can foster collaborations and help accelerate progress in clinical trials and treatment developments.

FSHD Europe Presents at the Annual EURO-NMD Meeting
Nicol Voermans and Ria de Haas had the privilege of presenting at the Annual EURO-NMD Meeting in Essen. They highlighted the work of FSHD Europe and the FSHD European Trial Network, sharing key insights with experts and patient advocates.
The European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) connects 82 leading clinical and research centres across 25 countries, along with dedicated patient organizations. Together, they work to advance care, research, and collaboration for rare neuromuscular diseases.

FSHD Europe Welcomes Ria de Haas as CEO
We are pleased to announce that Ria de Haas has been appointed as the new Chief Executive Officer (CEO) of FSHD Europe. Having previously served as project manager, Ria is now stepping into this leadership role to help guide the organization forward.
This marks an important step in FSHD Europe’s growth, especially with ongoing advancements in drug development and initiatives like Project Mercury. Our mission remains clear—to unite and amplify the voices of FSHD patients and their families across Europe.

Meet our Executive Board!
We are excited to welcome Andrew Graham as our new Treasurer and Caroline Elmstedt as Vice President. With their addition, our executive board now includes six members from Denmark, France, Spain, Sweden, and United Kingdom (UK).
The executive team ensures smoothly operations by overseeing daily activities, advising the CEO, making key decisions, and keeping us aligned with our goals.

FSHD Connect Europe Meeting – Registration & Scholarships Closed
Thank you to everyone who has helped spread the word about the FSHD Connect Europe Meeting and to those who registered or applied for scholarships.
We would like to inform you that the scholarship application process has now closed, along with general registration. Only individuals who have received a discount code will still be able to register.
For those who were unable to secure a spot, we have created a waiting list in case any places become available.
We are excited about the upcoming event in Amsterdam and look forward to welcoming so many of you in person!
The final program will be shared soon, so stay tuned for more details.

Sheila Hawkins Receives Lifetime Achievement Award

We are very proud to celebrate our president, Sheila Hawkins, who has been honoured with the Lifetime Achievement Award from Muscular Dystrophy UK.
A dedicated advocate for families affected by FSHD, Sheila has made a lasting impact through her work with Muscular Dystrophy UK, on their board and other committees and with FSHD Europe, she has also pushed for greater inclusivity in fashion, encouraging brands to design clothing for people with limited mobility.

Discover how the ‘Cure FSHD’ Clinical Trial Passport Program, an initiative of the FSHD Global Research Foundation, is supporting those living with FSHD. In this video, Leona and Jean-Paul share their personal stories of living with Facioscapulohumeral Muscular Dystrophy (FSHD) and explain how the program has provided vital support in their clinical trial journeys. Learn more about this groundbreaking initiative and how it’s helping individuals with FSHD take proactive steps toward treatment.

AMIS FSH, a French patient association, and member of FSHD Europe, is inviting international applications for research projects focused on innovative, high-risk/high-reward, and high-impact studies. The call supports fundamental or translational research, with a total funding pool of 60,000 euros for 2025. Each project can receive up to 25,000 euros per year and may run for a maximum of two years. 

FSHD Society invites you to submit nominations for the Young Investigator Award which recognizes a junior researcher who shows exceptional promise. Qualifications for nominations may include any postdoctoral trainees, clinical fellows, and junior faculty establishing their first independent laboratory (less than 5 years),

Join us at the FSHD Connect Europe Meeting in Amsterdam, June 13th – June 15th, 2025!
For more details about the FSHD Connect Europe Meeting, including the program, event information, location, and registration, please visit our registration website. Here, you can also reserve your hotel and secure your spot.

Get all the details you need to make the most of this exciting event.
We look forward to welcoming you in Amsterdam!

The Royal Yacht Club Canottieri Savoia in Naples has accepted to help FSHD Italia APS to spread the knowledge regarding FSHD. The Savoia yacht club is an historical sailing club and frequently organizes international regattas.

“Marion or the metamorphosis” A film by Laëtitia Moreau & Marion Sellenet
Marion is 35 years old. A visual artist from the Cévennes who lives in Brussels, she was 15 when she was diagnosed with FSHD.

As she gradually loses her muscles, a deeper metamorphosis takes place within her: the perception of what she has experienced so far as a disaster becomes an opportunity to reinvent herself and discover a new art of healing. A true hymn to life”