In addition to our freely accessible downloadable resources, Orphadata provides a range of datasets, services and tools derived from the Orphanet knowledge base:​ ​

  • Expert resources datasets: a directory of expert resources including centres of expertise, laboratories and diagnostic tests, patient organisations, research projects, clinical trials, registries, biobanks and medicinal products related to the diseases in the Orphanet nomenclature or rare diseases.
  • API Orphadata​
  • Customisable services
  • Tools (FAIR and SPARQL endpoints)​

To learn more about these products, consult the pages below or contact us

Conditions may apply depending on your status and intended use of the data/tools/services. A Data Transfer Agreement is the minimum requirement for academia/public entities. All other entities, as well as academic/public entities who need customised data/services, will be put in contact with the Orphanet-AISBL to formalise their needs and conclude a specific contract.

The Orphanet-AISBL is Orphanet’s non-profit spin-off, providing data and associated services to the rare disease ecosystem. By harnessing the power of the Orphanet knowledgebase the Orphanet-AISBL will support evidence-based decision-making and innovation.