Scientific publication in OJRD!

ECRD 2016_poster Expertise in Kaart'Expertise mapped' has her first publication in the Orphanet Journal of Rare Diseases! With this publication we hope to inspire other countries to include the patients’ perspective in the organisation of care for rare diseases.

The abstract is published because we presented a poster at the European Conference for Rare Diseases in May 2016. The best 20 posters of the submitted 200 posters were given the opportunity to publish an abstract. 

Here you can find the abstract: (page 7). Orphanet Journal of Rare Diseases 2016, 11(Suppl 1):143.


Would you like more information about the project? Please do not hesitate to contact us by phone (+31 38 4201764) or email (

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