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:: About Orphanet

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Orphanet services

Orphanet offers a range of freely accessible services:

The list of experts contributed to Orphanet to validate Scientific information provided on rare diseases in 2015 is available here.

The organisation and governance of Orphanet

Orphanet is led by a consortium of 35 countries (and 5 contact points) , coordinated by the French INSERM team. National teams are responsible for the collection of information on expert centres, medical laboratories, ongoing research and patient organisations in their country and translation in their language if funding available. All Orphanet teams work according to the Orphanet Standard Operating Procedures.

The coordinating team (Inserm US14) is responsible for the coordination of consortium activities, the hardware and software aspects of the project, the database of rare diseases and the production of the encyclopaedia, as well as the training of all members of the consortium and the quality control of the directory of resources in the participating countries.

The coordinating team is also in charge of updating the database in regards to medicinal products in development, from their designation stage to their marketing authorisation.

At International Level
  • The Management Board, composed of country coordinators, is in charge of identifying funding opportunities, guiding the project to provide an optimum service for the end-users, and considering the inclusion of new teams as well as ensuring the continuity of the project.

External boards:

  • The International Advisory Board, composed of international experts , is in charge of advising the Management Board regarding the overall strategy of the project.
    Rules of procedures available here.
  • The Genetic Advisory Board, is in charge of advising Orphanet on topics related to the gene database and the database of genetic tests and laboratories.
    Rules of procedures available here.

These boards discuss the evolution of the project in scope and depth; ensuring its coherence and its evolution, in relation to technological developments and to the needs of its end-users, as well as its sustainability.

In the framework of the RD-Action Joint Action 2015-2018 most of the Orphanet activities are co- funded by the EC. As a result, the Orphanet Management board also refers to the General Assembly of the RD-Action project (please refer to for additional information).

At national level
  • The National Advisory Board is composed by members nominated by the appropriate legitimate institutions which are defined at country level. The board members contribute with their expertise to Orphanet at country level.

Orphanet’s funding

The infrastructure and coordination activities are funded jointly by Inserm (the French National Institute of Health and Medical Research), the French Directorate General for Health, and the European Commission. Certain services are specifically funded by other partners. Orphanet’s national activities are financed by national institutions and/or specific contracts.

The Activity report of Orphanet

An activity report is produced annually and is published online on the Orphanet website.

Click here to consult the latest activity report.

Click here to access our website statistics.

 Orphanet partnerships