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European Reference Networks State-of-play

European Reference Networks State-of-play. Many of those affected by a rare or complex condition do not have access to diagnosis and high-quality treatment Expertise and specialist knowledge may be scarce as patient numbers are low

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European Reference Networks State-of-play

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  1. European Reference Networks State-of-play

  2. Many of those affected by a rare or complex condition do not have access to diagnosis and high-quality treatment Expertise and specialist knowledge may be scarce as patient numbers are low Importantdelay in diagnosis because of lack of carepathways, diagnosticcapacity (no testsavailable) and treatments in manycases No country alone has the knowledge and capacity to treat all rare and low prevalence complex diseases Thelogicbehind

  3. 24 Networks Full Member Affiliated partner 26Countries

  4. 24

  5. Very diverse! • Size: 17 members in TRANSPLANT-CHILD - 20 in ERNICA > 60 e.g. in EURACAN, EuroBloodNet , MetabERN 70 in Endo-ERN • Geographic coverage: 8 MS represented in ReCONNETbetween 10 and 13 in 16 ERNs 15-17 3 19 in Endo ERN 3 MS in none (SK, MT, EL) 8 in 1-3 BE, UK, IT in 23 NL, FR, DE in 24 • FreedomBoard of Network CoordinatingMember - Coordinator

  6. WHAT DO THE ERNs DO? Networking is the basis: "The knowledge travels, not the patient” • Exchange of expertise and clinical data on patient casesthrough the network and across the EU • IT toolprovided by the Commission, the ClinicalPatient Management System (CPMS)

  7. WHAT DO THE ERNs DO? • Knowledgegeneration - Clinical Practice Guidelines (CPGs) • Research • Training and eLearning

  8. ADDED VALUE of ERNs give patients and doctors across the EU access to the best expertise and timely exchange of knowledge, without having to travel to another country. • increase the likelihood of early and accurate diagnosis and effective treatment • improve public and professional awareness of rare and complex diseases • platforms for the development of guidelines, training and knowledge-sharing • facilitate large clinical studies to improve understanding and develop new drugs • opportunity for networking with likeminded experts from across Europe — ending professional isolation

  9. IMPACT of the ERNs The Networks are a visible demonstration of what solidarity can achieve in Europe. • Innovation in healthcare delivery is the cornerstone of the ERN system • Development of new care models, and innovative medical solutions and devices • boost economies of scale and ensure a more efficient use of resources, with a positive impact on the sustainability of national healthcare systems.

  10. Governance of the ERN Initiative • Board of Member States • ERN CoordinatorsGroup (HospitalManagers)

  11. The Commission • Definition of the legalframework for the establishment of the Networks / implementation of the procedures • Provision of support to the governance bodies • Funding of the initiative (the coordination of the Networks – the IT tools, other support activities …)

  12. The Member States • Endorse the healthcare providers wishing to becomemembersof the ERNs • Approve the Networks and theirmembership • Steer the initiative

  13. Challenges • Consolidation of the initiative (data protection issues, legalentity, long-termsustainability) • Integrationof the Networks in the healthcaresystems of the Member States • Geographic coverage of the Network

  14. Integration of the ERNs in the healthcare system of the Member States • Adapting the legal and regulatory framework (endorsement, participation of national healthcare providers in ERNs…) • Linking the ERNs to the healthcare systems (patient pathways - rules for referral) • Providing support • to the ERN members (participation of doctors in virtual panels, increased patients flows…) • the ERN Coordinators • for research • for awareness raising activities

  15. Geographic coverage • Underrepresentation • AffiliatedPartners • New Call for full membersin 2019 • Over-reprersentation / Governability

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