FSHD UK
// About fshd uk
International Collaborations on FSHD
Advancing progress in FSHD research, care, and treatment requires global collaboration. At FSHD UK, we are proud to work alongside leading international organisations, researchers, clinicians, patient advocacy groups, and clinical trial networks to help accelerate progress for people living with Facioscapulohumeral Muscular Dystrophy worldwide.
By collaborating across borders, we can help strengthen research, improve clinical trial readiness, share knowledge and expertise, and ensure that the voices of patients and families remain at the centre of future developments in FSHD care and treatment. International partnerships are essential in rare disease communities, where shared learning and coordinated action can significantly speed up progress.
FSHD UK actively contributes to several global initiatives and networks, including Project Mercury, the World FSHD Alliance, international clinical trial collaborations, and European research partnerships focused on improving outcomes for people affected by FSHD.
Through these collaborations, we continue working toward a shared goal — a future with better treatments, improved care pathways, greater awareness, and ultimately a cure for FSHD.
Project Mercury
FSHD UK is honored to be on the Global Task Force for Project Mercury.
“Project Mercury is a collaboration program led by the FSHD patient advocacy organisations 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 facioscapulohumeral muscular dystrophy (FSHD) around the world” – Project Mercury.
To learn more about Project Mercury click here
Over the course of 2024/2025 there will be further updates on Project Mercury. It is a key priority for FSHD UK and we are excited and dedicated to be a part of this world leading group. Watch this space.
World FSHD Alliance
FSHD UK has been a part of the World FSHD Alliance since 2021 and is a member of its steering committee. ‘The purpose of World FSHD Alliance is to connect and activate the FSHD community globally in order to build a worldwide community of activists, empower patients, and advance our shared mission of accelerating the development of therapies’ – World FSHD Alliance.
To learn more about the World FSHD Alliance please click here.
FSHD Clinical Trial Research Network
ReSOLVE and MOVE/MOVE+ are Natural History Studies in FSHD run by the FSHD Clinical Trial Research Network (based in Kansas, USA) “a consortium of academic research centres with expertise in FSHD clinical research or in conducting neuromuscular clinical trials” – FSHD CTRN.
FSHD UK has been liaising with the CTRN team to bring the MOVE/MOVE+ studies to the UK since 2021. In 2024 MOVE+ will be run across 3 centres in the UK, under an overarching ETHICS approval initiated by the Sheffield team.
To learn more about the FSHD CTRN please click here.
FSHD European Clinical Trial Network
Many members of our group are part of the FSHD European Clinical Trial Network. Many are leading key workstreams or are involved as a patient or clinician in specific European Neuro Muscular Centre (ENMC) studies such as the the FSHD MRI workshop or the upcoming FSHD Paediatric workshop.
To learn more about the FSHD European Clinical Trial Network please click here.
FSHD UK will become a member of FSHD Europe. We look forward to working with our European colleagues on Project Mercury and also in specific collaborative areas of focus as needed for furthering our FSHD initiatives.