European Joint Programme on Rare Diseases video subtitles
Hope you all had a great weekend! ?? For Rare Disease Day, the European Joint Programme on Rare Diseases (EJP-RD) released their first video that explains the EJP RD's goal ("To create an effective rare disease research ecosystem for progress, innovation and for the benefit of everyone with a rare disease") and what support it provides to the rare disease community! Take a look at this informative video in the link below! #ERNeu #EJPRD #together4rarediseases Orphanet EURORDIS - European Rare Diseases Organisation ... 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/