#ThrowbackThursday to VASCERN Days 2018! This photo of the HHT and VASCA-WGs was taken after their hour long interactive session. These interactive Rare Disease Working Group (RDWG) sessions (HTAD&MSA, HHT&VASCA and PPL&VASCA) were a great opportunity for our members to meet and collaborate with members from outside of their RDWGs. Stay tuned for a full article on VASCERN Days 2018 that will be available on the VASCERN website tomorrow! ?? HHT Onlus HHT España Hevas LGD Alliance Europe - Lymphangiomatosis en Gorham's Disease VASCAPA.asbl Amro France HHT ... 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/