News

  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,...

Staying active with FSHD can be challenging. Many patients wonder how to move safely without overworking their muscles. In an upcoming FSHD University webinar, we’ll explore the role of strength training and how it can support mobility, daily function, and overall well-being.

Dr. Nicole Voet, rehabilitation physician, and Ronne van Haaren, physical therapist at the Dutch Center for Neuromuscular Diseases, will share insights from their latest research on strength training in people with FSHD.

During the webinar, you’ll receive practical advice, learn about the potential benefits of strength training, and discover what to keep in mind when incorporating exercise into your daily routine. The goal: to help you move with more confidence and care.

On World FSHD Day, FSHD Spain organized and promoted a series of impactful activities to raise awareness about facioscapulohumeral muscular dystrophy across the country: • Interview to two young Spanish attendees to the recent FSHD Connect conference published on a...

On June 20, Italy once again joined the global FSHD community in marking World FSHD Day with an impactful mix of public awareness and community engagement. Iconic landmarks across the country lit up in orange—the color of hope and energy for the FSHD community—including the Colosseum, Palazzo Chigi, Palazzo Madama, Montecitorio in Rome, and the Maschio Angioino in Naples. The initiative aimed to shine a light—literally and symbolically—on facioscapulohumeral muscular dystrophy (FSHD), one of the most common forms of muscular dystrophy.

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.