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About us
Orphanet – Know the rare for better care
300 million people in the world live with a rare disease, united by common challenges, including poor visibility of their disease. Orphadata provides access to Orphanet’s knowledge base, an ensemble of structured data on all aspects of rare diseases, intended to foster knowledge, research, diagnosis and care.
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
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 academic researcher
/
bioinformatician
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,
biotechnology,
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
