About us​

FSHD Europe

The united European Voice for People with FSHD 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.

Our vision A cure for FSHD

Our 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 founded in 2010 by people living with FSHD and their close relatives who saw the value of collaboration across Europe. We currently have ten member organisations who support people with FSHD in different European countries. We recognise that every country has different contexts and challenges, with national organisations at different stages. We may not always have the answers, but we are committed to supporting our European FSHD community and will do all we can to help you. We believe in our capacity to do this.