Project Mercury is a collaborative effort established by the FSHD Society. The project brings together stakeholders from around the world to address the challenges that can slow the provision of effective therapies for patients globally. This collaboration operates on both a global and local level, with a Global Task Force and Country Working Groups, all led by patient advocacy organisations within the World FSHD Alliance. This dual approach ensures that Project Mercury’s efforts are tailored to local needs while leveraging resources on a global scale.
Patient and clinician engagement in research is crucial to achieving Project Mercury’s goals, and TREAT-NMD will be paying a pivotal role in facilitating this engagement and is actively involved in the Project Mercury Global Task Force.
TREAT-NMD will provide two key deliverables for Project Mercury activities, one of which is the development of an updated FSHD dataset. Building on experience in other disease areas, the updated dataset will facilitate future enquiries and data projects in the TREAT-NMD Global FSHD Registry network. The other deliverable is a clinician education programme featuring a range of masterclasses and workshops. Register your interest in the FSHD education programme here.