Governance

It is made up of the scientific team, the expert resources team, the IT team, the editorial team, the communication/valorization team and the international affairs team, and is managed by Ana Rath.

The Orphanet-France team is responsible for coordinating the activities of the Orphanet network, the infrastructure, the management tools, the database of rare diseases and orphan drugs, the production of the encyclopedia as well quality control of the directory of expert resources in the participating countries.

Updating the database is based on permanent bibliographic monitoring of international journals, which makes it possible to identify new syndromes, genes or treatments, to update the classifications of diseases, and serves as a basis for the production of the various texts (encyclopaedia, recommendations …).

All texts are produced with the collaboration of internationally recognized experts, learned societies, and/or patient associations. In France, we work closely with the teams of the reference centers labeled by the Ministry of Health and their network of designated competence centers, in particular through the Filières de Santé Maladies Rares.

The Orphanet-France team, like every team in the Orphanet network, is responsible for collecting, validating and submitting data on clinical trials, diagnostic laboratories, expert centres, research projects, registers , and patient associations in his country. The Orphanet-France team also manages the entry and updating of this data for all countries that do not have sufficient funding to pay a dedicated professional. In this case, the data is then submitted for validation by the coordinator of the country concerned.

In order to publish quality, relevant and accurate data (complete, valid, consistent, uniform with other data in the database and unique) an integrated validation and quality control process is carried out on all data by the team French, and communicated regularly to the other teams via an intranet.