Six months into the PaLaDIn project, FSHD Europe’s contribution to Work Package 9 is progressing well and remains on track. Funded by the Innovative Health Initiative (IHI), PaLaDIn—Patient Lifestyle and Disease Data Interactium—is developing an Interactium®, a patient-centred real-world data platform for neuromuscular diseases (NMD).

FSHD Europe is supporting this work as a subcontractor through TREAT-NMD, alongside Work Package 9 lead FSHD Society. This work is aligned with Project Mercury in addressing an important challenge: as promising FSHD therapies move closer to approval, stronger health-economic evidence and robust disease-progression models will be essential to support timely reimbursement decisions and patient access.

FSHD Europe joins a global call for stronger population-level research to better understand mortality and life expectancy across FSHD and support the community.

Satellos Bioscience, a biotechnology company in Canada, has received clearance from the US Food and Drug Administration (FDA) to begin a Phase 2 clinical trial of its investigational medicine, forazapadin, in adults living with facioscapulohumeral muscular dystrophy (FSHD). The company has also announced a funding partnership with the FSHD Canada Foundation that could provide up to US$5 million to support the programme.
The trial is expected to begin later in 2026 and will evaluate the investigational therapy in adults living with FSHD.

FDA clearance allows Dyne Therapeutics to begin the first Phase 1 clinical trial of DYNE-302, an investigational therapy targeting DUX4 in FSHD.

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...