Rare Disease Day 2019 testimonial from Romania
New Rare Disease Day Video out featuring a testimonial from Alina and her son Filip, who lives with achondroplasia (a genetic abnormality of bone growth). Listen to the challenges they face and how the educational and social systems have been involved in making sure his special needs are met. Rare Disease Day is just 3 weeks away!!! ??? Rare Disease Day videos are available in the various EU languages here: https://www.rarediseaseday.org/videos #ShareCareCure ... 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/