The RD-code project, co-funded by the European Union’s Third Health Program, intends to support Member States in the implementation of rare diseases-specific codification systems. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future. In the framework of the RD-CODE project, Orphanet provides a set of files, the Orphanet nomenclature files for coding, intended to be used to implement the Orphanet nomenclature in Health Information Systems for codification purposes. This set includes:
the Orphanet nomenclature file;
the Orphanet ICD-10 mapping file;
a directory containing the Orphanet classifications files.
These files are generated in xml format, and made available at least once a year, in 9 different languages: Czech, Dutch, English, French, German, Italian, Polish, Portuguese and Spanish. These files are available for free download in Orphadata and also made available here in Github with the previous versions as well as their related change logs.
In order to better understand and manage the xml files, we provide a detailed description of the Orphanet nomenclature files for coding.
Project home page
Our RD-code Github repository is dedicated to treat issues related, especially to nomenclature content and nomenclature implementation in Health systems.
Please post issues at our github tracker.
You can also check this FAQ.
How to quote
When quoting Orphanet, please use the following format : Orphanet: an online rare disease and orphan drug data base. © INSERM 1997. Available on http://www.orpha.net. Accessed [date accessed].
When quoting Orphadata (using xml files), please use the following format: Orphadata: Free access data from Orphanet. © INSERM 1997. Available on http://www.orphadata.org. Data version [e.g.XML data version].
We have chosen to apply the Commons Attribution 4.0 International (CC BY 4.0) to all copyrightable parts of our databases. This means that you are free to copy, distribute, display and make commercial use of these databases in all legislations, provided you give us credit.
You must indicate if you have made changes to the data. This can be done so in a reasonable manner, but not in any way that suggests that Orphanet endorses you or your use.
You may not apply legal terms or technological measures that legally restrict others from doing anything the license permits.
Please consult the terms of the licence for more information.