Professionals

Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAcode), essential in improving the visibility of rare diseases in health and research information systems.

Attached to a health establishment and placed under the responsibility of a medical coordinator, a rare disease health network (filièrse de santé maladie rare - FSMR) is an organization that coordinates a group of rare disease reference centers, specialized centers, resource centers, health professionals, diagnostic and research laboratories, educational, social and medico-social structures, universities, patient organizations and any other partner – including the private sector – bringing added value to collective action.

23 FSMR are labeled