Tuesday, 21 August, 2018

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.

The Orphanet website gives access to :

Orphanet is led by a European consortium of around 40 countries, coordinated by the French team. National teams are responsible for the collection of information on centres of expertise, medical laboratories, ongoing research and patient organisations in their country. All Orphanet teams respect the same quality charter. The French coordinating team is responsible for the infrastructure of Orphanet, management tools, quality control, rare disease inventory, classifications and production of the encyclopaedia.

Orphanet is governed by various committees, which independently supervise the project in order to ensure its coherence, evolution and viability:

  • The Steering Committee, made up of representatives from the agencies and bodies which finance Orphanet’s infrastructure and European coordination.
  • The Management Board, made up of Orphanet country coordinators. This committee is chaired by the director of the Inserm-Orphanet department.
  • The Editorial Board, made up of over 100 international experts.

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 through a Joint Action. Certain services are specifically funded by other partners. Orphanet’s national activities are also financed by national institutions and/or specific contracts.

Access the Orphanet activity report