EURORDIS - European Rare Diseases Organisation
The EURORDIS - European Rare Diseases Organisation Black Pearl awards are happening tonight and you can watch the livestream of this event using the link below!? Don't miss out on seeing our ePAG Co-Chair for HHT, ??????? ????????, be presented with the Eurordis Volunteer Award and to see which photo wins the photo contest (one of the finalists feature two sisters with Megalencephaly-capillary malformation syndrome, a rare disease covered by our Vascular Anomalies Working Group)! #ERNeu HHT Onlus HHT España HHT Ireland Morbus Osler Selbsthilfe e.V. - www.morbus-osler.de Hevas VASCAPA.asbl HHT UK ... 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/