EURORDIS - European Rare Diseases Organisation
VASCERN's covid-19 recommendations, as well as information, webinars and guidelines from national alliances and disease-specific groups, European groups (like Marfan Europe Network), official sources and other ERNs (e.g. ERN BOND - European Reference Network on Rare Bone Diseases, eUROGEN) can all be found on a dedicated covid-19 information page of the EURORDIS - European Rare Diseases Organisation website! A great resource for the #RareDisease community during this pandemic! ?? #StrongerTogether ... 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/