FSHD Europe
The 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
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.
Big welcome to our new member organisations!
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).
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.