The following files for coding provide the computable information necessary to achieve implementation of ORPHAcodes in health information systems, and ensure easier and accurate coding:

  • Orphanet nomenclature file ( XML Schema Definitions and JPEG representations for this file).
  • Orphanet to ICD-10/ICD-11 mapping files ( XML Schema Definitions and JPEG representations for this files).
  • 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.


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 packs

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

These products are an  IRDiRC regognized resources.

Previous Orphanet nomenclature pack