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
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
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.
FSHD Europe and TREAT-NMD collaborate in PaLaDIn
Today, March 19th, 2026, FSHD Europe announced its collaboration with TREAT-NMD and the PaLaDIn consortium to develop an FSHD disease model for health technology assessment (HTA), FSHD patient journey and patient advocacy toolkits. FSHD Europe strengthens its capacity...
Industry Update – Roche
Today, 19 March 2026, Roche announced that they have made the difficult decision not to advance emugrobart (an investigational anti-myostatin antibody, also known as GYM329) into Phase III development in FSHD. The decision to stop clinical activities for emugrobart in...
Official publication released on the results of the REACH study on Losmapimod
The full results of the international REACH study, a phase 3 clinical trial investigating the drug Losmapimod for FSHD, have recently been published. The study was conducted across nine countries and included a total of 260 participants with FSHD1 or FSHD2. Purpose of...
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...
A toolkit for new facioscapulohumeral muscular dystrophy trial sites
We are pleased to announce our newly published paper that offers practical guidance from international trial networks and site experience, providing a roadmap to help inexperienced sites qualify for upcoming clinical trials.
Since, numerous potential treatments are being developed for FSHD, clinical trial readiness is key. Project Mercury and global collaborations are working to overcome barriers to delivering effective FSHD therapies as numerous potential treatments are developed.
Thank you to Lawrence Korngut, Joost Kools, Nicol Voermans and all co-authors.
Read full paper here: Toolkit-for-new-facioscapulohumeral-muscular-dystrophy-trial-sites
FSHD Drug development – Industry Updates
FSHD is one of the most common forms of muscular dystrophy, yet there is currently no approved treatment. Across the world, many companies are working hard to develop effective therapies for people living with FSHD. Two industry partners shared an update on...