How to be registred in Orphanet

You can contact the Orphanet team in your country to register and/or update your activities related to rare diseases.

The Orphanet team thanks you very much for your cooperation!


If you are not registered in Orphanet, you must register at least one activity (expert centre, medical laboratory/diagnostic test, patient organisation, research project, clinical trial, etc.) to be kept in the database.

Before publication online, all the information will be validated by the Orphanet scientific advisory board according to its procedures.