FSHD Society University Recap: Project Mercury’s Global Impact and the Road Ahead
In a recent FSHD Society University webinar, Project Mercury Chair Emma Weatherly reflected on three years of global collaboration dedicated to preparing the FSHD community for future therapies.
Spanning ten countries, Project Mercury has helped expand FSHD registries to more than 10,000 patients worldwide, strengthen clinical trial capacity, develop readiness toolkits and frameworks, and advance a more proactive approach to treatment preparedness.
Beyond these achievements, Project Mercury has laid important foundations for the World FSHD Alliance. By bringing together patient organizations, clinicians, researchers, and advocates, the initiative has demonstrated the value of sharing knowledge, aligning strategies, and building common resources across borders.
The lessons, partnerships, and infrastructure developed through Project Mercury are helping shape the Alliance’s vision of a connected global FSHD community that works together to improve trial readiness, strengthen healthcare systems, and expand access to future therapies. As promising treatments move closer to reality, Project Mercury stands as a powerful example of what can be achieved when the global FSHD community unites around a shared goal: ensuring that no patient is left behind.
About the World Alliance
The World FSHD Alliance unites representatives from over 30 countries working to find a cure for, and to provide support for individuals living with facioscapulohumeral muscular dystrophy (FSHD). It was established because, together, by sharing resources, strategy, and “speaking in one voice,” we can accomplish much more in education, support, and advocacy. The World Alliance’s initiatives include: World FSHD Day, an international day of awareness, celebrated on June 20; Project Mercury, a collaborative project between advocate and pharma to increase the number of qualified clinical trials, increasing patient engagement, and maximizing on limited resources; and quarterly meetings amongst member countries.