Launch of Share4Rare digital platform
? Call to all rare disease patients and their families! A new digital platform called Share4Rare has just been launched that aims to create the largest community of patients and parents linked to rare diseases in order to promote mutual support and future research initiatives in a secure environment. Read more about Share4Rare">#Share4Rare and learn how to join the online community here: https://vascern.eu/launch-of-share4rare-digital-platform/ ??? #strongertogether #RareDiseases ... 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/