VSOP - Patient Alliance for Rare and Genetic Diseases
VSOP is the national patient alliance for rare and genetic diseases in The Netherlands, with a strong international orientation.
The mission of VSOP is to increase 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 has a membership of 90 patient and parent organisations, working with and for them with a staff of 15 dedicated co-workers. VSOP is actively involved in improving the lives of people living with a rare or genetic disease by working on patient-centred diagnostics, screening, genetics, heredity, prevention, quality of care, scientific research, therapy development and access to innovations. VSOP always takes the patients’ needs as its starting point, and works from that perspective in close cooperation with medical, scientific and governmental organisations in The Netherlands, Europe and worldwide. VSOP was founded in 1979.
Since long, VSOP has been active in European and international health policy and (research) projects, working together with EURORDIS, EPF, WHO and scientific / health consortia.
VSOP devleoped and hosts several websites with more focussed information than this site:
- 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 (not so up-todate)
Our apologies for the current limited information in English on these websites.
However, we hope this will not prevent you from contacting us. We are pleased to advise you at any time.