How to make #rarediseases more visible? Read this article on #ORPHAcodes by Monica Mazzucato et al. recently published in the Orphanet Journal of Rare Diseases (a legacy of the RD-CODE project coordinated by #Orphanet Full-text here: https://rdcu.be/dlxOg
The Spanish RD Federation (FEDER) has honoured Orphanet/RD-CODE project with an award for the creation of ORPHAcode for undiagnosed patients after full investigation!
Our ORPHAcodes and RD-CODE project video is now available in Finnish here!
Our video about ORPHAcodes and the RD-CODE project is now available in Dutch here! The Belgian rare diseases team, of which the members of Orphanet Belgium are part, took charge of the translation into Dutch of the ORPHAcodes video developed as part of the RD-code project. So far, this video was only available in English,…
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2 videos about Introduction to ORPHAcoding guidelines and ORPHAcoding undiagnosed patients guidelines are available!
http://www.rd-code.eu/wp-content/uploads/2022/04/RD-CODE-Report-Final-V4.pdf
We are happy to announce that we have delivered all the expected deliverables listed below (N.B. EC approval ongoing) D1.2 Internal newsletter WP1 Page D2.2 Multistakeholders Workshop reports WP2 Page D2.3 Dissemination report WP2 Page D2.5 Final Leaflet WP2 Page D2.6 Layman version of the executive summary of the final report WP2 page D3.2 Final…
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To tackle the issue of coding undiagnosed patients’ a collection of existing experiences of coding of undiagnosed or suspected RD patients has been produced, a guidelines proposal has been issued as well as a consensus document on codification of suspected/undiagnosed rare diseases in December 2020, an updated version of this document has been released on…
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