FAVA-Multi Filière santé maladies rares
A new video has been created by the French National Rare Disease Networks, led by the Filière de santé Maladies Rares FAVA-Multi (French Network for Rare Vascular Diseases), that explains their structure and missions and how they interact with the European Reference Networks. The video is in French but subtitles are available in English. The French National Rare Disease Networks, that have been in operation since 2015, show a good example of the benefits of creating national networks that unite and coordinate the various stakeholders of the rare disease community in one country and that can make the link with the European Reference Networks. Take a look here: https://youtu.be/9B5AGtC9Zao ... 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/