Workpackage 4- Implementation in four Member States

The objective of the implementing countries (Czech Republic, Malta, Romania and Spain) is to implement ORPHAcodes in Health Information Systems . To achieve this, user-friendly technical resources will be developed and coder training sessions will be organised in order to ensure easier and more accurate coding.

The heterogeneity of contexts and settings within the countries will ease the implementation in other Member States.

Available results:

A) Regarding the Orphanet Nomenclature:

1) All info can be found in the dedicated section:

2) A new Orphanet nomenclature help desk is available since 2019:  a unique contact point for codification issues and for data, model and technical issues. 

3) Finally a page where can be found tools which will provide the computable information necessary to achieve implementation of ORPHAnumbers in Health Information Systems, and ensure easier and accurate coding is available here:

NEW!: API to help decision making and visualise the nomenclature is available online since July 2020 : and DATA Visualisation tool available since December 2020 :

B) Regarding the implementing countries:

WP leader: CIBER

Participants: IHIS, MFH Malta, DSP IASI, FISABIO, Orphanet

European projects can be divided into “work packages” (WP). A work package can be thought of as a sub-project, which, when combined with other work packages, form the completed project.