About the project
Project Mercury is a collaboration program led by FSHD patient advocacy organizations in partnership with experts, biopharma companies and researchers, all networked together. The initiative is focused on solving specific challenges that slow or stop the development and delivery of therapies to people affected by FSHD around the world.
Solving these challenges includes:
- Increasing number of qualified clinical trials sites globally
- Increasing patient engagement in clinical research by:
- Patient registration to FSHD patient registries
- Gathering data on the true costs of FSHD to the patient and healthcare system to build the business case for coverage of treatment costs
- Empowering patients and clinicians with information and tools they need to actively engage in clinical research and access to therapies
- Global collaboration around Project Mercury’s goals among FSHD stakeholders to share and maximize limited resources, gain new insights, and ensure sustainability.