The Orphanet nomenclature pack compiles various files (listed below) which provide the computable information necessary to achieve implementation of ORPHAcodes in health information systems, and ensure easier and accurate coding. These files are updated once a year, in 9 different languages: Czech, Dutch, English, French, German, Italian, Polish, Portuguese and Spanish. Excel and PDF files are available in English and are common to all Orphanet nomenclature pack.

Each year the Orphanet nomenclature pack includes :

  • Orphanet nomenclature file ( XML Schema Definitions and JPEG representations for this file).
  • Orphanet to ICD-10  XML Schema Definitions and  JPEG representations for this files) and ICD-11 mapping files   XML Schema Definitions and  JPEG).
  • Orphanet classifications files by medical specialities ( XML Schema Definitions and JPEG representations for these files).
  • Linearisation file attributing one preferential medical specialty to every clinical entity ( XML Schema Definitions and JPEG representations for this file).
  • Master file (Excel file), the minimal set of ORPHAcodes, aligned with ICD-10 codes, that should be used for data sharing and statistical purposes at EU-level. More information about the Master file can be found here.
  • Orphanet nomenclature differential file (Excel file) which provides the key changes made to the nomenclature compared to the previous version.
  • Description file ( PDF file describing the xml files enclosed in the Orphanet nomenclature pack for coding). More information about the Aggregation level can be found here.
  • Recommendations and helpdesk for coding are available below in the dropdown menu.

The nomenclature is also available through dedicated APIs and a human-readable view is provided through Dataviz

All files are available under the  Commons Attribution 4.0 International (CC BY 4.0) licence

These products have been recognised as an  Elixir Core Data Resource and a  Global Core Biodata Resource

These products are an  IRDiRC Recognized Resources

Previous nomenclature packs