Newsletters
New edition of the VASCERN newsletter available now!!! ?? Including: VASCERN new Grant Agreement for Year 3 to Year 5 started (and our plans for the next 3 years), Claudia Crocione is in the VASCERN Spotlights, VASCA-WG Patient Pathway on severe/rare infantile hemangioma published, recap of the HHT-WG face to face meeting that was held in London and much more! Make sure to read and subscribe (if you haven't already!?) Link here: https://vascern.eu/news/newletters/?email_id=54 #ERNeu #ShareCareCure #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/