In April, the Project Mercury Global Task Force (GTF) convened virtually for its quarterly meeting, bringing together patient advocacy leaders, clinicians, researchers, and partners from across regions. Building on the momentum described in our previous update, this meeting focused on turning alignment into execution as the initiative enters its final phase of work ahead of the June 2026 in‑person meeting.
A Shared Milestone: The Interim Progress Report
A central focus of the meeting was the Interim Progress Report, designed to reflect on Project Mercury’s impact to date and to validate the work for industry partners, donors, and other stakeholders. The Task Force aligned on publishing the report as a public‑facing tool, to provide a model for other rare disease fields as a patient-led framework for global readiness and access planning.
Strengthening the Evidence Base: Real‑World Data and Trial Readiness
Updates from Working Group 1 highlighted steady progress toward a global real‑world data framework for FSHD. This framework is being developed with regulatory and health technology assessment (HTA) needs in mind and is guided by core principles that are patient‑centered, standardized yet flexible, and globally applicable.The Global Task Force reaffirmed Project Mercury’s recommended role in this space: endorsing datasets and providing frameworks, toolkits, and guidance
Looking Ahead: June and Beyond
The April meeting concluded with a clear sense of direction. Preparations are now underway for the June 2026 in‑person GTF meeting. With only a limited number of formal meetings remaining, the focus is firmly on delivery: finalizing shared outputs, strengthening partnerships, and ensuring that the progress achieved translates into lasting impact for the global FSHD community.
As Project Mercury moves from planning to execution, the Global Task Force remains committed to its founding principles: patient leadership, global collaboration, transparency, and readiness for real‑world impact.