#Pledge4RD campaign ahead of the 2019 European elections
The European elections are coming up soon! ???To support the European Commission's actions so far and to improve the management of rare diseases, EURORDIS has launched the #Pledge4RD campaign. Ask your Members of the European Parliament (MEP) to #Pledge4RD (pledge their support for rare diseases by posting a photo on social media holding up the #Pledge4RD sign)! It is essential that MEPs continue to support a political framework that helps and strengthens the rare disease community! Read about it here: https://vascern.eu/pledge-support-for-rare-diseases-ahead-of-the-2019-european-elections/ #ERNeu #EuropeanReferenceNetworks ... 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/