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.
During a recent FSHD Society University webinar, Project Mercury Chair Emma Weatherly reflected on three years of remarkable global collaboration and outlined the initiative’s strategic direction for the future. Emma highlighted how Project Mercury was established in response to a growing need to ensure that healthcare systems would be prepared
Project Mercury publishes its Interim Progress Report 2023–2025 — a document that captures two years of coordinated, patient-led effort to prepare the world for FSHD therapies. When Project Mercury launched in 2023, the challenge was clear: promising treatments in the pipeline would mean little if the systems needed to deliver
From 1–3 May 2026, representatives from Project Mercury participated in the 295th ENMC International Workshop on “Harmonizing Clinical Monitoring in FSHD”, held in Hoofddorp, The Netherlands. The workshop brought together leading clinicians, physical therapists, outcomes researchers, industry representatives, and patient organizations with a shared objective: to move toward global consensus
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.