The Global Initiative to Speed the Delivery of Therapies for FSHD
Timely access to effective FSHD medicines by patients everywhere faces several challenges:
- The high failure rates of clinical trials;
- That regulatory approvals don’t guarantee coverage of costs to the patients;
- A lack of engagement and collaboration between FSHD patients and other key stakeholders to solve these problems.
But we know the solution. Project Mercury.
What is Project Mercury?
It is an open collaboration among stakeholders from across the globe coming together to overcome the challenges that could slow or prevent effective therapies from getting to patients everywhere. This collaboration takes place at the global level through a Global Task Force and at the local level, through Country Working Groups. The Task Force and the Working Groups are all led by patient advocacy organizations of the World FSHD Alliance. This global-local approach ensures customization of Project Mercury’s work at the local level while sharing resources at the global level.
Project Mercury Goals
By 2025, Project Mercury aims to build a global cohort of 10,000 clinical-trial-ready, well-characterized patients; expand and optimize the world-wide clinical trial infrastructure; and remove the barriers that delay patient access to therapies once approved.
The FSHD Society’s Role in Project Mercury
The FSHD Society and FSHD Canada Foundation are founding members of Project Mercury. The Society’s role is to provide support, management and resources for Project Mercury.