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 Implementing countries specific activities, and to be able to have a forum to discuss country specific experiences and challenges with advice from WP5 team, collaborating partners and external experts. It was also an occasion to disseminate the projects results such as the availability of the Nomenclature Pack and of the Orphanet API to a wider audience and to collect feedback on how to adapt all Orphanet Codification tools to their real-life use. This workshop provided also an important forum to obtain feedback from implementing countries to allow refinement and update of the already existing guidance documents for implementation and exploitation:« Standard procedure and guide for the coding with Orphacodes » and the « Specification and implementation manual of the Master file »  both developed in the frame of the previous  Joint Action on rare Diseases RD-ACTION (2015-2018) ). Finally a final session dedicated to liasing with other relevant projects provided an opportunity to exchange with SOLVE-RD experts on the topic of « undiagnoses patients » as well as with eHealth experts. It was also decided that a dedicated workshop needed to be held to adress the topic of codification of undiagnoses patients. The Workshop roundtables proved essential in fine tuning the transversal workpackages activities that needed to be planned and launched and also in establishing links with other relevant initiatives/projects working on similar topics.

Full Agenda available here.

Slides available here.

Report available here