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Orphanet (Rare Disease Database)

INSERM (Institut National de la Santé et de la Recherche Médicale), France

HDB-0534

Orphanet is a reference portal on rare diseases and orphan drugs, maintaining an inventory and classification of rare diseases together with the ORPHAcode nomenclature, directories of expert centres, diagnostic tests and patient organisations. It was established by INSERM in France in 1997 and is now run by a consortium of partner countries; the website is free to use and bulk datasets are published through Orphadata.

Category

Terminology

Access

Open access

Region

Global

Data types

rare-disease-terminology, orphacode-classification

rare-disease disease-nomenclature orphan-drugs

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Record HDB-0534 · last verified 2026-08-24 · listed in Terminology & standards

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