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.
Following the successful first event in 2025, which brought together participants from more than 25 countries and nearly 200 attendees, we continue to build a growing European network in 2027.
Save the date and don’t miss it!
More information will follow via the FSHD Europe website. Stay updated and sign up for the newsletter.
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
Avidity Biosciences Investor & Analyst Event: FORTITUDE™ Topline Data and Regulatory Updates for del-brax in FSHD
Avidity announced topline data in the del-brax program demonstrating consistent improvement across multiple functional measures compared to placebo. Data will be presented at the 32nd Annual FSHD Society International Research Congress (IRC) in Amsterdam. More...
Chicago Highlights: Progress, Partnerships, and Momentum for FSHD
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 improving the...
Roche and FSHD Europe meet to discuss emugrobart Phase 2 study results
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 closely with...
Encouraging results from the Novartis Phase I/II FORTITUDE clinical trial
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
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
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).
Bringing FSHD Patient Insights to the 295th ENMC workshop
From 1 to 3 May 2026, the 295th ENMC workshop, “Harmonizing Clinical Monitoring in FSHD: Clinical Outcome Measures, Patient Perspectives, and Digital Innovations for the Upcoming Era of Drug Therapies” took place in Hoofddorp, The Netherlands. The workshop was co-organised by Dr K. Eichinger (USA), Dr E. Bugiardini (UK), and Prof. B. Schoser (Germany).
The workshop aimed to agree on a shared, practical approach to monitoring FSHD in routine clinical care: a way that works in different clinical settings, includes the patient’s own experience, and is ready for the era of new therapies.
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