On 28-29 September 2016 the RD-ACTION Workshop ‘Exchanging data for virtual care within the ERN Framework’ will take place in Brussels, to agree on guidance and good practices for ERNs to collect and share data for care. A key objective of the RD-ACTION Policy workpackage is to continue to provide support to the rare disease community by conceptualising, implementing and evolving robust ERNs capable of meeting the needs and expectations of people living and working with conditions requiring a specific concentration of expertise. As the first ERNs are established and evolve, shared consensus guidance is important to support the Networks but also to ensure a baseline compatibility and interoperability (at various levels) between the ERNs. Any such guidance should be elaborated with maximum input from the potential Coordinators and additional experts in the field of rare diseases.
ExPO-r-Net will be presented on this occasion by the Project Coordinator Professor Ruth Ladenstein and other project partners.