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European Reference Networks for Rare Diseases

ERNs aim to improve quality, safety, and access to specialized healthcare for patients with rare and complex diseases. These networks facilitate cooperation, research, and knowledge sharing among healthcare providers across Europe. Key elements include structured cooperation, top-level research, education, and patient care improvements.

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European Reference Networks for Rare Diseases

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  1. European Reference Networks Annika Nowak European Commission

  2. The ERN Networks of healthcare providers aiming at improving quality, and safety and access to highly specialised healthcare Need of cooperation: • Scarcity knowledge • Need education • Complexity / high cost • Effectiveness in the use of resources Patients affected by rare or low prevalence and complex diseases Added value at EU level Multidisciplinary approach (different specialities/areas of knowledge)

  3. Outcome call 2016 24 Full Member Affiliated partner Networks 26 COUNTRIES

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  5. Clinical virtual care Remote monitoring & follow-up Remote guidance and diagnosis

  6. Research, innovation & knowledge generation Key Elements of ERNs • A framework for structured cooperation to maximise cross-country expertise through joint research projects and clinical trials • ERN provide an opportunity to build top level translational and basic research around shared strategies • Dissemination of research results, education & training activities

  7. Registries, research and ERNs PATIENT CARE Patientclinicalunmeetneeds (treatment/diagnosis) Patient Data Population Cohorts/Concentration of cases Secured Databases Clinical/Imaging/ Biological Data Genetics, Molecular Pathology IT Solutions / Communication between HCP RESEARCH Research question/gap Prospective research Translational/trials common elements , principles and requisites

  8. Funding/support

  9. Next steps and actions: ERNs and Research • Building up research capabilities among ERNs • Participation of the ERNs in the call European Joint Programming (EJP) on rare diseases (part of Horizon 2020) and future FP9 • Plans to interact with the European Strategy Forum on Research Infrastructures (ESFRI) • Interaction with IMI initiatives, European Medicines Agency and clinical trials related initiatives.

  10. Further information: http://ec.europa.eu/health/ern/policy/index_en.htm

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