EUROPEAN REFERENCE NETWORK ON RARE HEMATOLOGICAL DISEASES

ended

ERN-EuroBloodNet is conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information and patient mobility in Rare Hematological Diseases (RHDs). The previously established state-of-the art on RHDs needs allowed the implementation of tailored strategies based on transversal and disease-specific approaches, where actions focused on very rare RHDs have been prioritized. The recent expansion to 96 Members from 18 Member States (MS) and 7 Affiliated Partners from 6 MS, situates the network in an optimum position to consolidate and further expand the key results from its first 5 years of implementation. ERN-EuroBloodNet will support inter-professional consultations through the Clinical Patient Management System. In order to enhance best practices across EU, actions will be taken to develop and update Clinical Practice Guidelines, other Decision Making tools, and patients’ summaries and pathways. ERN-EuroBloodNet will strengthen the use and re-use of RHDs health data through its central registry, ENROL, which combines the exhaustiveness of data collection at EU level for health planning and epidemiological porpoises, with a higher level of data granularity for identification of patients’ cohorts to engage translational and clinical research. Lastly, different actions are contemplated not only to improve multidisciplinary teams training but also to foster patients’ education as fundamental pillar for their active empowerment towards best care. Target-driven synergies established with the European Hematology Association and EURORDIS will be strengthened to address gaps in the most efficient manner. All in all, ERN-EuroBloodNet consolidates the coordination and operational activities of the network while scaling up actions among and beyond the recently enlarged ERN ecosystem.