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”
FSHD Europe is privileged to be part of Project Mercury which is a global patient-led initiative with the primary goal of speeding up the delivery of new therapies for FSHD.
Over the weekend Ria de Haas and Nicol Voermans participated in the Global Task Force Meeting representing FSHD Europe/ FSHD European Trial Network. It’s amazing to see the work and progress being made by working together globally! Thank you everyone for this productive and inspiring time together in Barcelona!
More info: https://lnkd.in/deZHheJV
FSHD Europe/ FSHD European Trial Network, FSHD Society, FSHD Global Research Foundation, FSHD SPAIN, Lumiio Inc., AFM-Téléthon
FSHD Europe came together in the weekend of 18-20 October 2024 in France for our General
Assembly Meeting. First, we had a wonderful tour at the laboratory of hashtag#Généthon / hashtag#AFMThéléthon in Evry and learned about gene therapy
development for rare diseases. During the following days, patient representatives of our 13 member organisations came together. We had a very productive and enjoyable meeting where we recognized how far we have come, identified challenges and opportunities, set our strategy, and defined activities to realise our goals. Thank you to all participants for this great weekend! FSHD Europe is the united voice of people with FSHD.
We are excited to announce that FSHD Finland has joined FSHD Europe. Lauri Pirinen and Lora Chun are the patient representatives of FSHD Finland. They did an incredible job in starting their own organization in a very short time. We look forward to a successful collaboration.
Curious about their inspiring story? In a case study, they share how FSHD Finland was established, and it provides valuable insights to encourage other countries to start their own patient organization.
FSHD Europe participated in the 279th ENMC workshop “Classification, clinical care, outcome measures and biomarkers in childhood-onset FSHD: towards standardising clinical care and ensuring clinical trial readiness”. Twenty-seven participants, including clinicians, research experts, patient advocates, and industry representatives, from 14 different countries engaged in this workshop.
FSHD Europe would like to thank the organizers, Dr C. Erasmus (The Netherlands), Prof. K. Mathews (USA), K. de Valle (Australia) and Prof. T. Willis (UK), for the opportunity to present on the FSHD European Trial Network & Market Access. We had very interesting and fruitful discussions on the spectrum of FSHD, the challenges of trials in children, and the most appropriate clinical outcome measures. Gaps of knowledge were defined, and task groups were formed to work on this. Hence, we will continue working together towards clinical trial readiness for children with FSHD.
For more information, please read the lay report which is published on the ENMC website (click here).
Lay reports – ENMC
NEW date: 32nd FSHD International Research Congress, June 12th – 13th, 2025, Amsterdam, The Netherlands
FSHD Society’s annual FSHD International Research Congress (IRC) is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research.
FSHD Europe congratulate Nicol Voermans with the appointment as Professor of Muscular Diseases at Radboud University, Nijmegen, the Netherlands. On Thursday September 12th, Nicol delivered her inspirational inaugural speech entitled: ‘Between Hype and Hope’.
One of the next steps on our journey is to engage with regulators to understand the process of approving drugs to be available to patients across Europe. Therefore, FSHD Europe organized a webinar with EMA (European Medicine Agency) to learn more about the role of patients in their approval process. It was an informative webinar, and we would like to thank the speaker, Maria Mavris (Patient Liaison, EMA) and all the patient representatives attending.
Recently two national patient organizations, FSHD UK and MD Slovenia joined FSHD Europe as new member organizations. FSHD Europe is very pleased having now 12 members from 10 different countries (Sweden, France, UK, Germany, Netherlands, Italy, Spain, Denmark, Slovenia, and Belgium). The aim is to include more European countries. If you know national patient organizations or patient groups involved in FSHD, not yet connected to FSHD Europe. Please refer them to Ria de Haas (ria@fshd-europe.info).
On September 12th, 2024, Fulcrum announced that its Phase 3 REACH trial evaluating losmapimod in patients with FSHD, did not achieve its primary endpoint of change from baseline in RSA (measure of reachable workspace) with losmapimod compared to placebo. In addition, secondary endpoints did not achieve nominal statistical significance. The company decided to suspend its development of Losmapimod.