Expert resources

The Orphanet knowledge base includes a directory of expert resources : 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 (see the catalogue of products and detailed description of datasets).

XML samples for each expert resource with their related XSD and JPEG schema representations are available below.

These datasets are available on request via signature of a Data Transfer Agreement (for academia) or via signature of a service contract (for for-profit).

To access these datasets, a Data Transfer Agreement is the minimum requirement for academia/public entities. All other entities will be put in contact with the Orphanet-AISBL, our non-profit spin-off providing data and associated services, to formalise their needs and conclude a specific contract.