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FSHD Connect Europe 2027

Mark your calendar: 25–27 June 2027, FSHD Connect Europe will take place in Madrid, Spain.

Three inspiring days dedicated to knowledge sharing, connection, and community. A unique gathering where people living with FSHD, their families, and the wider community from across Europe come together — a place where everyone feels seen, heard, and part of one strong community.

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We’re here to help

FSHD Europe was founded in 2010 by people living with FSHD and their close relatives who saw the value of collaboration across Europe.

We currently have ten member organisations who support people with FSHD in different European countries. We recognise that every country has different contexts and challenges, with national organisations at different stages. We may not always have the answers, but we are committed to supporting our European FSHD community and will do all we can to help you. We believe in our capacity to do this.

If you have any questions or need help, please reach out to us.

Contact us

Become a Friend of FSHD Europe

By giving a small monthly donation, you help FSHD Europe support patients across Europe. Your contribution makes it possible to accelerate the development of treatments, provide reliable information, and educate clinicians and communities. Every little bit counts—together we can make a real difference.

Thank you for supporting FSHD Europe.

Donate now

One in 10,000

FSHD Spain filmed and released a commercial, directed by the prestigious film director Chus Gutierrez, to raise awareness of FSHD, a rare, neurodegenerative, genetic disease that causes progressive weakness of skeletal muscle.

This powerful video shows a strong message from the FSHD patient community: “We fight like warriors, united as an army. We keep walking, we will not stop.”

FSHD European Trial Network (ETN)

In 2021, FSHD Europe established the FSHD European Trial Network (ETN) to support collaboration to reach trial readiness, building on current research on FSHD in Europe.

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.

About the ETN

News & articles

All updates

Chicago highlights: progress, partnerships, and momentum for FSHD

Jul 16, 2026

16 July 2026 The global FSHD community came together in Chicago for the FSHD International Research Congress (IRC) 2026, FSHD Connect, and the Project Mercury Global Task Force meeting – a week filled with scientific progress, collaboration, and renewed commitment to...

Roche and FSHD Europe meet to discuss emugrobart Phase 2 study results

Jul 15, 2026

15 July 2026. On 9 July 2026, members of the Roche Patient Partnership Team and European representatives of the FSHD Patient Advocacy Group met to discuss the results of the Phase 2 MANOEUVRE study of the investigational therapy emugrobart for FSHD. Roche has worked...

Encouraging results from the Novartis Phase I/II FORTITUDE clinical trial

Jul 8, 2026

Novartis has announced encouraging results from the Phase I/II FORTITUDE clinical trial of delpacibart braxlosiran (del-brax), an investigational treatment for FSHD. The study met its primary biomarker endpoint, marking an important step forward in the development of potential disease-modifying treatments for FSHD.

Encouraging early results from the EPI-321 clinical trial for FSHD

Jul 8, 2026

Encouraging early results from the EPI-321 clinical trial for FSHD

Recent news from the FSHD research pipeline has brought cautious optimism to our FSHD community. Epicrispr Biotechnologies has announced encouraging early findings from its ongoing Phase 1/2 clinical trial of EPI-321, an investigational therapy designed to target the root cause of FSHD.

Italy’s FSHD community gathers in Rome — because no one gets left behind

Jun 4, 2026

Italy’s FSHD community gathers in Rome on World FSHD Day
On 20 June 2026, FSHD Italia APS will host the XII National FSHD Conference in Rome — on World FSHD Day itself — bringing together patients, caregivers, clinicians and researchers for a full day of science, advocacy and community. The event takes place at UNA Hotels Decò (Sala Campidoglio), is free of charge and available in live streaming, with prior registration.
The conference is organised in collaboration with UILDM and the FSHD Group of AIM (Italian Association of Myology).

Join Us!

FSHD Europe is the voice of FSHD patients across Europe and by joining you will become part of that bigger and louder voice. We work with clinicians and researchers, regulators, and pharmaceutical companies.

We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.

Become a member