Final Multistakeholder Workshop

1. 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 member states participating in RD-CODE and discuss on potential improvements on the available coding guidelines, disseminate information about the available coding guidelines including those about coding undiagnosed patients. On the second day representatives from the collaborating project XeHealth presented their project achievements and in particular how the  Patient Summary can serve RDs. It was also the opportunity to discuss with them about setting up a  RD Demonstrator. A multistakeolder panel, with representatives from the French National registry, (BNDMR) ERKnet, EUHA and ECHO allowed to discuss with the different stakeholders and to understand their needs. Finally, a closing session on the project legacy allowed to discuss future options to keep the RD-CODE community of practice alive.

Full Agenda and report available here.

Slides Day 1 available here, slides Day 2 available here.