FSHD Europe

FSHD Europe is a European patient organisation dedicated to improving the lives of people affected by facioscapulohumeral muscular dystrophy (FSHD), advocating for better care, access to treatments and progress towards a cure.

Established in 2010 by people living with FSHD and their families, FSHD Europe brings together 14 member organisations across Europe, united by a shared commitment to strengthening the patient voice and advancing cross-border collaboration.

Its mission is to improve the quality of life of patients and their families by promoting early and accurate diagnosis, access to optimal care and the development of effective treatments. FSHD Europe works closely with researchers, clinicians, pharmaceutical companies, regulators and national patient organisations to ensure that patients’ needs and experiences remain at the heart of research and healthcare decisions.

Strategic Priorities

To accelerate progress in FSHD research and treatment development, FSHD Europe focuses on four strategic pillars:

• Patient Advocacy & Education: Empowering patient representatives to engage with regulators, healthcare authorities and industry, ensuring that patient perspectives are reflected in decision-making.
• Clinical Trial Readiness: Strengthening clinical trial infrastructure, coordinating research sites and supporting patient participation through registries and biobanks.
• Drug Approval & Access: Promoting patient involvement in regulatory processes and supporting equitable access to new treatments across Europe.
• Stakeholder Engagement: Fostering European and international collaboration through initiatives such as Project Mercury and the World FSHD Alliance.

Through these initiatives, FSHD Europe aims to build a stronger, more connected European FSHD community, accelerate therapeutic progress and ensure that advances in research translate into meaningful improvements for patients and their families.