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Terminology owner/maintenance organisation

Name, contact details, website

WHO

The website is managed by a consortium of academic establishments from 35 countries, led by Inserm.

Formal name of the code system

ORPHANET

Short name or abbreviation of the code system name

ORPHANET
Technical identifier/s of the code system (OIDs, URNs etc)

Scope/domain statement for the code system

(Official or from HTA)

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Link to information about the code system - including how to obtain the content

https://www.orpha.net/consor/cgi-bin/index.php?lng=EN

Arrangement or agreements with HL7 for use of content


IP Information and Licensing Information

The INSERM holds all intellectual property rights concerning the structure of the database, the format of the website, the logo and copyright, as well as the data and information on the site (content, texts, classifications, nomenclatures, and press statements).
No element or part of the site (including, but not limited to, the database and the information contained within) can be copied, translated, reproduced, exploited, published, electronically stocked or redistributed for commercial use without prior written consent.

HL7 users of this information - which HL7 products use this link (if known)


Process to request content change


Other useful Information


Information current as at (date)


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