News

In recent years, Professor Nicol Voermans has dedicated significant time and energy to FSHD Europe and the FSHD European Trial Network (ETN). She is also a key contributor to the Global Task Force of Project Mercury—a unique international working group that brings...

The VI FSHD SPAIN Congress, held in Madrid on April 4 and 5, marked a significant success for the FSHD community. With 130 attendees, it represented a notable increase in participation compared to 82 attendees in Valencia in 2024. Another great success was the...

This May, EURO-NMD hosted a dedicated 4-episode webinar series on FSHD. These engaging online sessions offered valuable insights into the latest developments and research on FSHD. Each webinar focused on a key topic: Genetic Diagnosis of FSHD by Prof. Emiliano...

The second edition of the Summer School on Multidisciplinary Management of Neuromuscular Diseases, co-organized by the European Reference Network for Rare Neuromuscular Diseases (ERN EURO-NMD) and the French network of expertise on NMDs (FILNEMUS) is scheduled for 24...

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...

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.