The Web’s Most Searched Questions About Rare Disease | EJP Rare Diseases
Watch the new European Joint Programme on Rare Diseases (EJP RD) video that features EJP RD contributors answering the web’s most searched questions about rare diseases! ?
Why are rare diseases an important medical and social issue? How to get funding for rare disease research projects? These questions and many more are all answered! Watch the video here ➡: https://youtu.be/n0EOCX3ghIM
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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/