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The second ERN newsletter is now online! ? This edition features two interviews (one with the Chair of the ERN Coordinators Group), the latest news on the enlargement of the 24 networks and some articles presenting good practices (including VASCERN's patient pathways ☺☺) and inspirational stories from patients helped by the ERNs. Read it here ➡ https://ec.europa.eu/newsroom/sante/newsletter-specific-archive-issue.cfm?archtype=specific&newsletter_service_id=1431&newsletter_issue_id=18898&page=1&fullDate=Sun%2012%20May%202019&lang=default MetabERN Ern-Eye eUROGEN ERN-TransplantChild ERKNet ... See more
EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join.The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET.In this meeting, the organisers will begin to curate the list of Domain specific Common Data Elements (DCDEs) compiled by the EJP RD FAIRification stewards from the data dictionaries provided by the ERN registries. The aim of the DCDEs is to be able to share domain specific data between ERNs, data that is not currently covered by the Common Data Elements (CDEs).More information and registration here: https://erica-rd.eu/event/domain-specific-common-data-elements-dcdes-curation/