Project Mercury is built on the conviction that meaningful change in FSHD research and care must be driven by those most affected—patients, families, and the communities that support them. At the heart of this global initiative are the Country Working Groups (CWGs), where national voices converge to shape international impact.
This section highlights the extraordinary contributions of CWGs, with a special focus on how patient organisations are not only participating—but leading. Their lived experience, strategic insight, and relentless advocacy are accelerating progress toward therapies and reshaping the landscape of FSHD.
We now turn to FSHD Spain, whose commitment to collaboration and clinical excellence is helping shape the future of FSHD care across Europe. We asked Ricardo Gerpe, CWG lead for FSHD Spain, to share his insights, experiences and key learnings. Ricardo and FSHD Spain remind us that meaningful change starts with one voice, but grows through the power of collective action. For FSHD Spain, Project Mercury has become much more than a project—it’s a global promise to uplift, unite, and deliver hope to everyone living with FSHD. Through developing a rigorous clinical registry and fostering collaborations with pharmaceutical partners, FSHD Spain exemplifies how patient-driven initiatives can make a tangible impact and strengthen national efforts. Project Mercury is a testament to solidarity and a shared commitment to brighter futures for all those affected by FSHD.
FSHD Spain: Leading the Charge in Patient-Driven Progress—An Interview on Project Mercury’s Impact
What inspired FSHD Spain to join Project Mercury—and what does this collaboration mean to you personally?
FSHD Spain joined Project Mercury with the belief that collective action can lead to real progress for patients. The initiative’s clear objectives and shared purpose resonated deeply with our mission to improve the lives of patients and families affected by this condition. For us, every step we take as part of Project Mercury is fueled by the voices and hopes of our community—and that makes this collaboration feel urgent.
My own experience in multinational projects is now in service to this FSHD cause. It’s rewarding to contribute to something that has the potential to make a tangible impact, the sense of being useful and part of a global movement is deeply fulfilling.
What has been FSHD Spain’s most meaningful contribution to Project Mercury so far—from patient engagement to data collection or advocacy?
Our most significant contribution has been the creation of a high-quality clinical registry, designed to support the goal of identifying well-characterized patients. While its launch has taken longer than expected due to rigorous requirements, the integrity of the data meets the highest standards.
Additionally, FSHD Spain has played a key role in fostering relationships with pharmaceutical companies. Spain is currently hosting or preparing for three clinical trials, and in two of these, our organization has actively supported either the biopharma company or the candidate centers.
These efforts are possible only because of the relentless advocacy and courage of patients who refuse to accept the status quo, choosing instead to shape a future where new therapies become a reality.
How has Project Mercury helped FSHD Spain strengthen its national efforts—whether in visibility, partnerships, or strategic planning?
Project Mercury has helped us understand the value of a structured approach to funding, which has had a transformative effect on our strategic planning. Through Mercury, we have built strong, trusting partnerships with other Country Working Group members—exchanges that foster collaborations, resource sharing, and a stronger national presence for our mission. It is the unity of patients across borders that truly amplifies our impact.
What moments of collaboration or solidarity within the Country Working Groups have stood out to you?
The most unforgettable moments have come during in-person meetings with fellow CWG members and industry partners. In these gatherings, the determination of patients and advocates from all corners of the world is palpable—each story, each handshake a reminder that we are stronger together. These experiences have deepened our understanding of the project’s complexity and reinforced the sense of hope and solidarity that drives us forward.
Looking ahead, what are FSHD Spain’s hopes and priorities for the next phase of Project Mercury?
Our immediate priority is to accelerate the completion and expansion of the clinical registry, recognizing that every delay matters to the patients awaiting new therapies. Beyond this, our priorities are to break down barriers to access for emerging treatments and to secure the long-term sustainability of our work. Above all, we are driven by the determination of patients who inspire us daily—with their courage, resilience, and unwillingness to give up. Their voices light the way toward a brighter future for all those affected by FSHD.