Watch this space / join and help out – let’s make a difference together.
2024 planning is underway. Here are some of the things we have got planned.
Team Start Up/Set Up
- Jan-March: Charity Admin set up
- March/Early April : Website Launch
Clinical Trial Readiness
- March : Avidity Fortitude P1/2 Trial starts at 2 Sites: UCL and Sheffield
- March : MOVE + to be launched under ETHICS for multiple sites
- WIP : FSHD UK Network Database Initiative funding proposal
Research Team Network
- WIP: Plan to meet for next steps
Stakeholder Engagement
- WIP: Engagement Plan
Internation Collaboration
- April :Project Mercury Country Working Group /GAP analysis work starts – Patient Journey to Advocacy
- Join FSHD Europe Formally
- WIP: UK FSHD Registry – Alignment with PalaDIN (Mercury)
- Paediatrics Working Group: European Clinical Network (ECN)
Patient Engagement @ Site
- May : UCL
- Sept/Oct: Glasgow
- Oct/Nov: Newcastle
Cost of FSHD
- WIP: Mercury guidance
Fundraising – A Priority