Two VASCERN HCP representatives awardees at the 2019 Baillet Latour Medical Research Awards
We are very proud to share the news that both Professor Julie De Backer, Chair of the Heritable Thoracic Aortic Diseases Working Group (HTAD WG), and Professor Catherine Boileau (HTAD WG member) were awarded at this year’s Baillet Latour medical research Awards 2019! Congratulations to both for their outstanding contribution to improving the lives of patients with rare cardiovascular diseases (in particular #MarfanSyndrome)! Read all about the awards and their work here: https://vascern.eu/two-vascern-hcp-representatives-awardees-at-the-2019-baillet-latour-medical-research-awards/ #Marfan #Genetics #cardiovascular #research Marfan Europe Network AssoMarfans Syndrome de Marfan den-i asbl Marfan Hilfe - Deutschland e.V. Svenska Marfanföreningen Asociación Síndrome de Marfan-España-SIMA . Association Belge du Syndrome de Marfan - ABSM asbl ... 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/