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February 14 2018

Editorial on the European Reference Networks in OrphaNews

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The latest edition of OrphaNews features an editorial dedicated to the European ReferenceNetworks (ERNs), highlighting their first year of achievements and the challenges they still face ahead. Many topics are covered including the successful launch and implementation of the Clinical Patient Management System (the virtual consultation tool), data integration and interoperability in ERN registries, the Governance structures of the ERN Coordinators, the non-competitive funding opportunities available to all ERNs, the support that ERNs receive from RD-Action, and the future expansion of the 24 ERNs in 2018.

“2017 was an important year for the 24 European Reference Networks (ERNs): it was the year in which the Networks were officially launched (at the annual conference in Vilnius in March 2017) and in which they began to address their multiple responsibilities as Networks spanning the domains of care and research for rare diseases/conditions requiring a concentration of expertise. 2018, however, will be the year in which the core clinical activities of the ERNs really take shape, and exciting developments lie ahead.”

Read the full article here


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