Information for foreign / Ukraine patients with rare diseases
Information under construction.
If you are looking for a Centre of Expertise for your rare disease in The Netherlands, please call our general number (+31 35 6034040) and ask for Ilze, Silvia or Cor.
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 more than 100 patient and parent organisations, working with and for them with a staff of 14 dedicated co-workers. VSOP is actively involved in improving the lives of patients 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.
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 (not so up-todate)
Our apologies for the currently 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.