Rare2030 - Foresight in Rare Disease Policy
Have you heard about the new 2-year initiative (co-funded by the European Union Pilot Projects and Preparatory Actions Programme (2014- 2020) and led by EURORDIS - European Rare Diseases Organisation) dedicated to the planning of the next ten years of rare disease policy called Rare2030 - Foresight in Rare Disease Policy? If not, take a look at their website to see who is involved and follow their news on Facebook. The ultimate purpose of this project is to allow for the creation of new recommendations aimed towards European and national-level policy-makers, thereby preparing a better future for people living with rare diseases in Europe with foresight! #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/