FSHD Europe
The united European Voice for People with FSHD
FSHD Connect Europe 2025
FSHD Europe, in collaboration with the FSHD Society, is excited to announce the first FSHD Connect Europe meeting, taking place from June 13th to June 15th 2025 in Amsterdam, The Netherlands.
This exclusive event brings together FSHD patients and their families, clinicians, and researchers. It is a unique opportunity to connect, share experiences and building lasting connections.
Don’t miss out on this exceptional opportunity to be part of the FSHD
community’s growth! Spaces are limited, so register early to secure your spot.
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. Registration is closed. Do you have a registration code? Use it to still register.
Get all the details you need to make the most of this exciting event.
We look forward to welcoming you in Amsterdam!
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
Enhance Your Site’s Visibility: Register with the Clinical Trial Site Registry
Enhance Your Site’s Visibility: Register with the Clinical Trial Site Registry
The Care and Trial Site Registry (CTSR) is a valuable online platform aimed at advancing clinical research in neuromuscular diseases. By enrolling your site in the CTSR, you become part of a global network of specialized centers, which enhances your site’s visibility to researchers, industry partners, and patients. This increased exposure can foster collaborations and help accelerate progress in clinical trials and treatment developments.
FSHD Europe Presents at the Annual EURO-NMD Meeting
FSHD Europe Presents at the Annual EURO-NMD Meeting
Nicol Voermans and Ria de Haas had the privilege of presenting at the Annual EURO-NMD Meeting in Essen. They highlighted the work of FSHD Europe and the FSHD European Trial Network, sharing key insights with experts and patient advocates.
The European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) connects 82 leading clinical and research centres across 25 countries, along with dedicated patient organizations. Together, they work to advance care, research, and collaboration for rare neuromuscular diseases.
FSHD Europe Welcomes Ria de Haas as CEO
FSHD Europe Welcomes Ria de Haas as CEO
We are pleased to announce that Ria de Haas has been appointed as the new Chief Executive Officer (CEO) of FSHD Europe. Having previously served as project manager, Ria is now stepping into this leadership role to help guide the organization forward.
This marks an important step in FSHD Europe’s growth, especially with ongoing advancements in drug development and initiatives like Project Mercury. Our mission remains clear—to unite and amplify the voices of FSHD patients and their families across Europe.
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.