VSOP - Patient Alliance for Rare and Genetic Diseases

VSOP is the national patient alliance for rare and genetic diseases in The Netherlands. Our mission is to contribute to the quality of life of people living with a rare and/or genetic disease, their families and generations to come, by prevention, early diagnosis, therapeutic research, better health care and more societal awareness. VSOP was founded in 1979.

VSOP has a membership of about 85 patient and parent organisations, working with and for them with a dedicated staff. We are actively working on improving the quality of life of patients and families living with a rare or genetic disease. We do so by by working on patient-centred diagnostics, screening, genetics, heredity, prevention, quality of care, scientific research, therapy development and access to innovations. We take the patients’ needs as the starting point when working in close cooperation with medical, scientific and governmental organisations.

VSOP has a strong international orientation. Since long, we are active in European and international health policy and (research) projects, working together with EURORDIS, and scientific/health consortia.

We host several thematic websites:

• Centres of expertise: www.zichtopzeldzaam.nl
• Syndromes: www.syndromen.net
• No diagnosis: www.ziekteonbekend.nl
• Information on rare diseases for GP’s: Informatie voor huisartsen | VSOP
• Rare diseases in general: https://zeldzameaandoening.nl/thema-overzicht/

Please contact us for more information. We are pleased to advise you at any time.