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 and data on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet maintains the Orphanet rare disease nomenclature (ORPHA number/ ORPHA codes), essential in improving the visibility of rare diseases in health and research information systems.
Orphanet provides information on professionals whose activity(ies) in the field of rare diseases is (are) registered in Orphanet. This includes, for example, consultant and physicians in charge of an expert centre, biologists in a laboratory, researchers, representatives of patient organisations, coordinators of networks, principal investigators of clinical trials, managers or contact person of registries and biobanks, and experts writing or peer-reviewing data for Orphanet.
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