Statements on integration of European Reference Networks into the national health systems and cooperation with industry

PATIENTS, ORGANISATIONS, SERVICES

Statements on integration of European Reference Networks into the national health systems and cooperation with industry

https://ec.europa.eu/newsroom/sante/newsletter-specific-archive-issue.cfm?archtype=specific&newsletter_service_id=1431&newsletter_issue_id=16186&page=1&fullDate=Thu 07 Mar 2019&lang=default

Interviews with key players

Interview with Andrzej Rys, European Commission – DG SANTE More   Interview with Eve Parier, Hospital manager of St Louis, Lariboisière, Fernand Widal – France More

News from the ERN community

Two statements adopted on ERNs integration into the national health systems and cooperation with industry More   ERN hospital managers committed to strengthen collaboration to support the implementation of the ERNs More Support for the setting-up of registries of patients affected by rare diseases available for all the ERNs More

Good practices and inspirational stories

How the ERNs are embedded in national rare disease policy: the French experience More   The Hungarian National Plan: improving the care of people living with rare diseases More How to customise the CPMS to specific ERN needs: the example of ERN-EYE More   Solving the unsolved rare diseases: the Solve-RD project More Electronic reporting tool to support monitoring activity of the ERNs: the case of “e-REC” implemented by Endo-ERN More   Clinical Practice Guidelines for rare diseases, how to gather and adapt existing (rare) expertise to improve effectiveness and quality of care: the experience of ERN ReCONNET More Information to patients and health professionals: VASCERN’s Do’s and Don’ts Factsheets for rare vascular disease patients More   A “CPMS newsletter” to keep healthcare professionals informed about the latest developments: an initiative of eUROGEN More Education and training for patients and health professionals: the experience of ERKNet More   An online expert advice service for patients affected by respiratory rare diseases: the EXABO initiative set up by ERN-LUNG More Training healthcare professionals: the webinars organised by EURO-NMD More   “Patient journeys” to help patients share their experience with their diseases: the experience of ERN GENTURIS More Improving the transition from paediatric to adult healthcare: a project carried out by MetabERN More   Mapping of activity and expertise to support work in the field of rare diseases: the case of Transplantchild