First RD-CODE multistakeholders workshop held in Prague, 22-23 June

The first RD-CODE multistakeholders workshop was held in Prague on the 22-23 June 2020. It was an « hybrid event », with particpants attending from Czech Republic meeting « de visu » at the Prague Congress Centre and participants from other countries attending remotely. The objectives of this workshop were multiple such as learning about the RD-CODE project and…
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Orphanet API available online since July 2020 This API allows for the identification of : – the correspondence between ORPHAcodes (aggregation level and parent-of-preference for every ORPHAcode within the hierarchical ORPHA nomenclature). but also preferred terms; synonims; definition; typology; Orphanet IRL; Status; target ORPHAcod eif inactive; Classification level; Classification; ICD10 and OMIM.

Coders training organised in Czech republic

The first course for easier implementation of ORPHAcodes for coders took place in Motol hospital on 19 February. Course was attended by 17 participants including doctors, coders and hospital representatives.  Other courses had to be postponed due to the disease COVID-19.  All powerpoint presentations and detailed manual for coders for entering rare disease cases into…
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RD-CODE project mid-term evaluation report available

Achievements leaflet available


Background Report on the “coding environment” of implementing countries available

The Background Report on the “coding environment” of implementing countries has been prepared by the WP5 participants, lead by Veneto region, and with the contribution of WP4 participants. It was released in July 2019 an dit is available here. It is organized into 4 parts describing the coding starting situation of three RD-CODE participant countries…
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Orphanet Nomenclature pack available online

The Orphanet nomenclature is used to code the diagnosis of a rare disease with a unique and time-stable identifier, the ORPHAnumber (also named ORPHAcode) in order to facilitate data collection, research and analysis. These files are available here: They provide the computable information necessary to achieve the implementation of ORPHAnumbers in Health Information Systems,…
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Orphanet Nomenclature Helpdesk available online

A page with general information on the Orphanet Nomenclature production and maintenance and links for further reading is available: Moreover a page dedicated to answering questions related to the Orphanet nomenclature content and the implementation of ORPHA codes in Health Information Systems is now avaialble here: For this purpose, an online ticketing system…
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RD-Code project leaflet available

The RD-code KOM project leaflet is now available!

RD-CODE project Kick off meeting

To take public health action on rare diseases, it is necessary to know how many people are affected by these diseases (prevalence), how these conditions impact those affected, and to monitor rare diseases’ medical and societal impact. The lack of basic epidemiology for rare diseases across Europe contributes to a lack of recognition and hinders…
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