These questions led to the formation of Project Mercury, a patient-led collaborative global initiative to ensure timely access to effective and affordable treatments for people affected by facioscapulohumeral muscular dystrophy (FSHD) everywhere.
At the World Orphan Drug Congress Europe 2026, FSHD Europe hosted a panel on how patient experience becomes evidence that health technology assessment bodies accept. The panel took place last week. Project Mercury was not on that stage. The questions raised there are the ones our Country Working Groups have
A candidate FSHD therapy is moving into the clinic, and a patient organization helped put it there. It is the second time this has happened in three months. On 24 September 2026, the U.S. Food and Drug Administration cleared an Investigational New Drug application for forazapadin in facioscapulohumeral muscular dystrophy.
Attention Patient Advocate Leaders: You are invited to participate in a study on Advance Care Planning and palliative care in FSHD. This study is conducted by Radboud University Medical Centre, the Netherlands, in collaboration with FSHD Global and FSHD Europe. Advance Care Planning is the process of thinking about and
This project is supported by the Innovative Health Initiative Joint Undertaking (IHI JU) under grant agreement No 101132943. The JU receives support from the European Union’s Horizon Europe research and innovation programme, COCIR, EFPIA, EuropaBio, MedTech Europe, Vaccines Europe (and the FSHD Society and TREAT-NMD Services Ltd as contributing beneficiaries participating in the project). The project will also receive funding from UK Research and Innovation (UKRI) under the UK government’s Horizon Europe funding guarantee [grant numbers 10105921, 10103989, and 10083579].
Funded by the European Union, the private members, and those contributing beneficiaries of the IHI JU. Views and opinions expressed are, however, those of the author(s) only and do not necessarily reflect those of the aforementioned parties. Neither of the aforementioned parties can be held responsible for them.