VASCERN: The ERN on rare multisystemic vascular diseases
What an amazing two days we just had at the 4th Conference on European Reference Networks in Brussels, Belgium! :D While we will be writing an full article on the event (there's too much to report in a simple Facebook post), we thought we would share a photo album with some great photos right now! :) Thanks to the ERN team at DG Sante for bringing us all together and giving us the opportunity to celebrate our successes, discuss the challenges we still need to overcome and strengthen the bond that exists between us all! We definitely feel inspired and motivated to continue to #ShareCareCure! Watch all the presentations (VIDEOS AVAILABLE) here: https://ec.europa.eu/health/ern/events/ev_20181121_en#c Nederlands Netwerk voor Lymfoedeem & Lipoedeem - NLNet Association Belge du Syndrome de Marfan - ABSM asbl bindweefsel.be -Vlaamse Vereniging voor Erfelijke BindweefselaandoeningenEURORDIS - European Rare Diseases Organisation Orphanet ... 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/