News

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 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...

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...

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...

  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...