Catégorie : Non classé

AWARD for the ORPHAcode for undiagnosed patients after full investigation

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!

ORPHAcodes video available in Finnish!

Our ORPHAcodes and RD-CODE project video is now available in Finnish here!

ORPHAcodes Video available in Dutch

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,…
Lire la suite

Guidelines videos

2 videos about Introduction to ORPHAcoding guidelines and ORPHAcoding undiagnosed patients guidelines are available!

General Public Report available

Final RD-CODE deliveries

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…
Lire la suite

Visibility to undiagnosed patients

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…
Lire la suite

Final Multistakeholder Workshop

The second and Final Multistakeholder Workshop was held virtually on the 29 and 30 November 2021, and was organised by CIBER. It gathered 77 participants including all project partners as well as ERNs, EUHA and ECHO representatives. The objectives of this Workshop were multiple : learning about the final outcomes of ORPHAcodes implementation in the 4…
Lire la suite