Orphanet: Register your activity
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You are going to access the Orphanet registration tool.

This new service allows to register and/or update your activities related to rare diseases on Orphanet, the reference portal for rare diseases and orphan drugs.

Please click on the link below to access the Orphanet online registration service

Orphanet online registration service

Please note that if you are not already registered, you will have to create an account. You will receive your personal identifiers and will be asked to change your password within 24 hours.

Your identifiers will allow you to access a personal workspace in which :

  • - You may register new activities related to rare diseases
  • - Check and update the activities you have already registered with us.
  • - Communicate with the Orphanet team in your country.

Please note that this service is currently available in English. Further languages will be added in the near future.

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.