EURORDIS - European Rare Diseases Organisation
Our #ePAG Co-Chair for the Vascular Anomalies Working Group, Caroline van den Bosch, is back in the spotlight today thanks to the latest eNews article from EURORDIS - European Rare Diseases Organisation entitled "From concept to reality: true patient partnership in European Reference Networks"! ?⭐? Access the full article below and read Caroline's VASCERN Spotlights article again here: https://vascern.eu/vascern-spotlights-caroline-van-den-bosch/ #PatientInvolvement #ERNeu Hevas ... 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/