The European Society of Cardiology Congress was last week and many members of VASCERN gave presentations at this international event! The Heritable Thoracic Aortic Diseases (HTAD) WG was particularly well represented! :) To see the list of notable presentations from VASCERN members and to access the presentations (via the ESC website), click here: https://vascern.eu/vascern-at-the-european-society-of-cardiology-congress-in-paris/ Marfan Europe Network AssoMarfans Svenska Marfanföreningen Association Belge du Syndrome de Marfan - ABSM asbl Marfan Hilfe - Deutschland e.V. Asociación Síndrome de Marfan-España-SIMA . Aortic Disease Awareness Day ... 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/