We’re here to help
Vision: 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 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.
If you have any questions or need help, please reach out to us.
Our people
Sheila Hawkins
President
Sylvie Genet
Secretary
Kees van der Graaf
Treasurer
Paola de Donato
María Gómez-Rodulfo
Caroline Elmstedt
Bine Haase
María Vriens
Hicham Alaoui
Annalisa Alimandi
Patricia Schultz
Hanne Skovgaard
Karsten Bech
Ricardo Gerpe
Stefania Bertucci
Mia de Marez
Raj Badiani
Lauri Pirinen
Lora Chun
Our staff
Ria de Haas
Project manager
Ingrid Molegraaf
Operations support
Our advisors
Alexandre Mejat
Project advisor
Julie Dumonceaux
Scientific advisor
Nicol Voermans
Medical advisor
Miriam Wagner Long
Project Mercury advisor
Organizational support
FSHD Europe is offering the ‘Guide to starting up a FSHD patient organisation’ and ‘Guide to create and manage a website’, to help and support you. We’d like to thank the Axial Spondyloarthritis International Federation (ASIF) and the International Mito Patients (IMP) for generously sharing with us the templates of their excellent ‘How To’ guides.
We understand that every country has different contexts and challenges. And we might 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 your capacity to do this. And you will likely hit obstacles and frustrations. Please reach out to us at info@fshd-europe.info