We joined the French Network for Rare Vascular Diseases Filière de santé Maladies Rares FAVA-Multi, along with ERN-LUNG - European Reference Network for rare respiratory diseases and other French Rare Disease Networks at Gare Saint-Lazare in Paris for #RareDiseaseDay2019! ??Always lots of fun to meet the general public in order to raise awareness for #rarediseases and to represent the #ERNs! #RareDiseaseDay may only be once a year but we are proud to be one of the 24 ERNs that are doing such great work to improve the care of rare disease patients in Europe all year round! #ShowYourRare #ShareCareCure ... 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/