About Us

sion: A cure for FSHD

Mission: To improve the quality of life for all patients and their families, and facilitate the easy diagnosis of FSHD, and enable all patients have access to the best treatment. FSHD Europe unites and amplifies the voice of FSHD patients across Europe, raising awareness and interest among all stakeholders, including researchers, clinicians, pharmaceutical companies, regulators, payors, and national patient organizations.

FSHD Europe was established in 2010 by individuals living with FSHD and their close relatives, united by a powerful belief in the strength of cross-border collaboration. Today, we proudly represent fourteen member organisations across Europe, each dedicated to supporting people with FSHD in their unique national contexts.

We understand that every country faces its own challenges and operates at different stages of development. We are committed to doing everything in our power to support you and are confident in our ability to make a meaningful impact together.

Strategic Pillars:

FSHD Europe defined a comprehensive strategy to accelerate progress in FSHD drug development across Europe, anchored in four strategic pillars.

Patient Advocacy & Education will empower patient advocates to engage meaningfully with EMA, HTA bodies, and industry, ensuring the lived experience of FSHD remains central. Clinical Trial Readiness focuses on expanding and coordinating trial sites, strengthening infrastructure, and mobilising patient participation through registries and biobanks. Under Drug Approval & Access, we aim to embed patient input in regulatory processes, support submissions with real-life testimonials, and generate evidence for HTA. Finally, Stakeholder Engagement will drive European coordination and global collaboration through initiatives like Project Mercury and the World FSHD Alliance, sharing tools and strategies to accelerate therapy delivery.