EURORDIS - European Rare Diseases Organisation
THE only awards show you need to watch this season is the EURORDIS - European Rare Diseases Organisation Black Pearl Awards Ceremony! ✨ It happens next Tuesday, February 12th, 2019, and you can sit back and watch all the action as it will be streamed online! Prof Guillaume Jondeau, VASCERN Corrdinator, is a member of the Black Pearl Committee and will also be in attendance at this event! Congrats to all winners for your contribution to the #RareDisease community!?? ... 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/