Early April, Project Mercury was proud to be represented at the SOLVE FSHD meeting in Canada, where our Chair, Emma Weatherley, shared our work with an international community of researchers, clinicians, industry partners, and patient advocates. The meeting provided a valuable opportunity to connect with leaders from across the FSHD ecosystem and to reinforce a message that is becoming increasingly urgent across rare disease: scientific progress alone is not enough. Coordination is essential if patients are to benefit at pace.
A Shared Challenge in Rare Disease
Across rare diseases, and particularly in FSHD, innovation is accelerating. New therapeutic approaches are advancing through preclinical and clinical development, offering real hope to patients and families. Yet, a critical challenge remains:
How do we move faster from research to patient access in a way that is coordinated, evidence‑driven, and scalable across markets?
Too often, promising therapies encounter delays after clinical development, slowed by fragmented data generation, misaligned regulatory and reimbursement expectations, and limited clinical infrastructure. These challenges are not scientific in nature; they are systemic. Addressing them requires collaboration across stakeholders and early alignment on what “success” looks like beyond approval.
As a patient led global collaboration, the focus is clear. Build trial ready cohorts, strengthen clinical infrastructure, and generate the real world and health economic evidence required to support regulatory and reimbursement decisions.
The Central Role of Industry Partnership
There is a significant opportunity to align early on evidence expectations and messaging across regulatory and payor markets globally, reducing duplication, accelerating timelines and improving the likelihood of patient access once therapies are approved.
Momentum Is Building
The message from SOLVE FSHD this week was clear and encouraging. Scientific progress is advancing rapidly, and the commitment across the community – to collaboration, transparency, and patient‑centred development – is stronger than ever.
With the right coordination, this momentum can translate into something powerful: faster timelines, reduced friction between stakeholders, and ultimately, earlier and more equitable access to therapies for people living with FSHD.
Bringing Alignment to Action
Project Mercury’s role is not to replace the vital work already happening across research, industry, and advocacy but to connect it. By bringing stakeholders together around shared goals and shared evidence, we can reduce fragmentation and increase the likelihood that innovation reaches patients without unnecessary delay. The conversations in Canada reinforced our belief that alignment is not only possible; it is essential. And with continued collaboration across the global FSHD community, it is well within reach.
Project Mercury is bringing that alignment.