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Orphanet – Know the rare for better care

300 million people in the world live with a rare disease, united by common challenges, including that of poor visibility of their disease. Orphanet’s knowledge base, accessible through Orphadata services, provides the data needed to improve every step of the care pathway.

This knowledge base is structured around the Orphanet nomenclature of rare diseases, a dedicated and globally-recognised standard that improves data interoperability between healthcare and research information systems.

Orphanet is coordinated by INSERM-US14 in Paris, France.

Orphadata in numbers

Clinical Entities
Disease gene relationships
Phenotypic annotations
Epidemiological data
Orphan designations and drugs
Diagnostic tests

How it works ?

Orphadata provides the scientific community with comprehensive, massive, re-usable and computable quality data sets related to rare diseases from the Orphanet knowledge base.

I’m an editor of hospital/laboratory software

I’m a representative of a European Reference Network, governmental agency, European commision

I’m a representative of an industry,
pharmaceutical group

I’m a representative of a non governmental agency / foundation / charity

Orphadata Team

The Orphadata team is based at the Orphanet coordination offices in Paris (Inserm US14). We are ready to answer any questions you may have about accessing and using Orphadata.

Marc Hanauer

Deputy Director & Chief Technology Officer

Charlotte Rodwell

Partnerships, Business Development & Strategic Communications Officer

Valerie Lanneau

Product Owner

David Lagorce

Lead Technology Officer