News

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”

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.