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But the publication of the latest data shows that many countries, including some tax havens, are being very selective about who they are choosing to share information with.
It seems many OECD countries prefer to play this kind of ‘dating’ game among themselves…
Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAnumber), essential in improving the visibility of rare diseases in health and research information systems.
Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997.
This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.
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