Joint Action on integration of ERNs into national healthcare systems

ongoing

European Reference Networks (ERN) are multinational networks of highly specialized healthcare providers (HCP) across Europe in thematically coherent medical domains, addressing rare or low-prevalence complex diseases requiring exceptional concentration of expertise and resources. There are currently 24 ERN providing virtual expert consultations for patients from all member states (MS) and Norway, as well as support knowledge generation, professional training and education, and research. In this project, we aim to enhance the impact of the ERN even further by addressing all aspects of their better integration into healthcare systems in MS. This will include improving national governance of ERN-HCP, quality assurance models, patient pathways and ERN referral systems, supporting the formation of national reference networks and undiagnosed diseases programs or equivalent strategies interlinked with ERN, improving data management, aiming to finally achieve full interoperability of regional, national and European health data sources, and identifying national support options for ERN-HCP. Furthermore, we will develop strategies for systematic dissemination of information on the ERN, with a specific emphasis on patients as well as the medical community. A main focus will be to ensure the sustainability of the proposed actions and implementations, which we propose to integrate into updated national plans and strategies for rare diseases in MS.