FSHD UK was founded in 2021 with a clear purpose — to bring together patients, clinicians, researchers, charities, and industry partners to accelerate progress for people living with Facioscapulohumeral Muscular Dystrophy (FSHD) across the United Kingdom.

What began as a small but determined initiative quickly grew into a nationally recognised organisation focused on improving collaboration, expanding clinical trial opportunities, supporting research, and strengthening the voice of the UK FSHD community. In 2023, FSHD UK officially became a registered charity, marking an important milestone in our continued commitment to supporting those affected by FSHD.

Our journey has been driven by one shared goal: creating a future where people living with FSHD have access to better support, greater awareness, improved care pathways, and meaningful treatment opportunities.

Over the years, we have helped strengthen connections between healthcare professionals, patient registries, researchers, advocacy groups, and the wider FSHD community. By working collaboratively, we continue to help raise awareness of FSHD and support the progress of research and clinical trials both in the UK and internationally.

While significant progress has been made, our journey is far from over. Every step forward brings renewed hope for individuals and families affected by FSHD, and we remain committed to driving positive change for the future.

Together, we continue moving forward.