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.
Domenico, what inspired FSHD Italia to join Project Mercury—and what does this collaboration mean to you personally?
FSHD Italia joined Project Mercury because we recognized the urgent need for a global, coordinated effort to accelerate therapies for FSHD. As a patient-led organization, we wanted to ensure that the voices of Italian patients and families were represented in this international initiative.
On a personal level, the motivation is deeply connected to my own life: both my son Corrado and I live with FSHD. Seeing how the disease is affecting his future and psychological balance has given me an even stronger determination to contribute to solutions.
At the same time, Project Mercury has been an extraordinary opportunity for me to gain knowledge: knowledge of the complex ecosystem that moves around FSHD; knowledge of people of great value and competence who dedicate their time and energy to a common cause, often choosing to sacrifice other opportunities for the sake of the community, with little or no financial reward. With some of these people I have developed bonds that go beyond collaboration—I consider them true friendships.
What has been Italy’s most meaningful contribution to Project Mercury so far—from patient engagement to data collection or advocacy?
Italy’s most meaningful contribution has been in the area of patient engagement and community mobilization. Through FSHD Italia, we have raised awareness among patients, families, and clinicians about the importance of participating in international research and data sharing.
FSHD Italia has provided analysis and proposals intended to support the achievement of Project Mercury’s global objectives. At a national level, organizational measures and collaborative efforts with other stakeholders have also been implemented, which may have informed the approaches of other Country Working Groups. Efforts have further included advocacy activities to ensure that the Italian community participates in global discussions.
How has Project Mercury helped FSHD Italia strengthen its national efforts—whether in visibility, partnerships, or strategic planning?
Project Mercury has been an enormous stimulus for growth and improvement for FSHD Italia. Being part of a project managed with a strong managerial spirit and modern tools, and having to measure ourselves against much more developed partners, has pushed us to raise our own standards.
The initiative has also given FSHD Italia a stronger national voice. Being part of a respected global effort has increased our visibility and credibility, opening doors for partnerships with clinicians, researchers, and policymakers in Italy. It has provided a clearer framework for strategic planning: by aligning our national priorities with global goals, we can better focus our resources and energy on actions that will truly make a difference.
What moments of collaboration or solidarity within the Country Working Groups have stood out to you?
What has impressed me most is the spirit of solidarity across countries. Despite very different contexts, we all share the same urgency and determination. I recall discussions where colleagues from diverse healthcare systems expressed the same frustrations and hopes—and instantly we felt united by a common purpose. These moments remind me that while FSHD may affect us individually, the fight against it is truly collective.
Looking ahead, what are FSHD Italia’s hopes and priorities for the next phase of Project Mercury?
Looking ahead, our hope is that Project Mercury will bring us closer to therapies that can change the lives of people like my son and all those affected by FSHD worldwide. At the same time, the Italian CWG has identified concrete priorities for the immediate future:
- Accelerating the development of the new national patient registry.
- Securing funding for the national adaptation of the economic model to be used in HTA procedures.
- Launching advocacy activities with AIFA, the national authority responsible for HTA.
- Improving communication with patients.
- Consolidating the network with other national stakeholders.
- Advancing the professionalization and managerial capacity of FSHD Italia.
Support FSHD Italia APS
Your support can help FSHD Italia accelerate the development of a national patient registry, strengthen advocacy with health authorities, and expand its network of care and research. By investing in FSHD Italia, you are investing in a future where families like Domenico’s have access to therapies, hope, and a stronger voice in shaping the path forward.
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