FSHD Europe
The united European Voice for People with FSHD
FSHD Connect Europe 2025 in Amsterdam – A great success!
From 13 to 15 June 2025, the FSHD Connect Europe meeting took place in Amsterdam. This international event brought together around 200 participants from across Europe and beyond.
The weekend focused on knowledge sharing, peer support, and the latest developments in the field of FSHD. Most importantly, it created a unique opportunity for patients and their families to connect with one another.
A big thank you to our sponsors, inspiring speakers, dedicated volunteers, and enthusiastic participants. Your support and energy made this event a true success. We are also very grateful to the FSHD Society for their help and support.
We are proud of what we have achieved together—and even prouder to be part of such a strong, united global FSHD community.
If you captured special moments during the weekend that you’re happy to share, please send them to us. With your permission, we may feature them on our website and social media channels to help showcase the energy and spirit of the event. You can email your photos to secretariat@fshd-europe.info
All presentations from the programme will soon be available on the FSHD Connect Europe page.
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
The Dutch FSHD Foundation is pleased to share some exciting news.
In recent years, Professor Nicol Voermans has dedicated significant time and energy to FSHD Europe and the FSHD European Trial Network (ETN). She is also a key contributor to the Global Task Force of Project Mercury—a unique international working group that brings...
The VI FSHD SPAIN Congress was a great success!
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EURO-NMD Webinar series on FSHD Now available online!
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