FSHD Europe
The united European Voice for People with FSHD
Save the date: FSHD Connect Europe patient meeting 2025
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 20th – June 22nd, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. Attendees will be informed about the latest research, drug development, and clinical trials, as well as managing symptoms and improving quality of life. It is a great opportunity to connect with other patients and families across Europe. More details will follow early 2025 on our website and in our newsletter. We hope to see you there!
Get involved!
FSHD European Trial Network (ETN)
Nicol Voermans as chair and Pascal Laforet as vice chair; George Padberg and Baziel van Engelen as advisors coordinate this project, initiated by FSHD Europe.
The primary goal of the FSHD European Trial Network is to connect the clinicians involved in care for FSHD in all European countries and increase the trial capacity in Europe allowing more centres to participate in upcoming trials and making new treatments widely accessible to patients.
News & articles
General Assembly Meeting
FSHD Europe came together this weekend 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.
Inauguration Prof. Nicol Voermans
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’.
Patient involvement in the EMA medicine lifecycle
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.
Join Us!
We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.