Information video for patients and healthcare professionals about the ERNs
? NEW Information video and flyer about the European Reference Networks (ERNs) has just been released by the European Commission! These new materials are aimed at informing patients and healthcare professionals about how the ERNs work! They are currently only available in English but will be translated in all European languages by the start of 2019! Read our article here: https://vascern.eu/new-ern-information-video-and-flyer-for-patients-and-healthcare-professionals/ Share these resources with everyone you know so that information about the ERNs can reach a wider community! https://youtu.be/t5ucPpyHLrg ? #ShareCareCure #ERNeu Ern-Eye MetabERN ERN for rare adult solid cancers Rare Endo-ERN ... 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/