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 100 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, EPF, WHO and scientific/health consortia.

We host several thematic websites:

• Centres of expertise: www.zichtopzeldzaam.nl
• Registries: www.patientenregisters.org
• Syndromes: www.syndromen.net
• No diagnosis: www.ziekteonbekend.nl
• Network of diagnostic hospital policlinics for undiagnosed patients: https://diagnoseonbekend.nl/
• Information on rare diseases for GP’s: https://www.nhg.org/thema/zeldzame-ziekten
• Rare diseases in general: https://zeldzameaandoening.nl/thema-overzicht/
• Patient consultation panel: www.zeldzaaminzicht.nl
• Preconception care: www.preparingforlife.net
• EGAN: www.egan.eu

Our apologies for the currently limited information in English on our websites.
However, we hope this will not prevent you from contacting us. We are pleased to advise you at any time.