New ePAG Co-Chair for the Pediatric and Primary Lymphedema Working Group!
It's Friday!!! ?No better time to announce the good news: Pernille Henriksen has joined VASCERN as the new European Patient Advocacy Group (ePAG) Co-Chair for the Pediatric and Primary Lymphedema Working Group (#PPL-WG)! ? Pernille is on the board of the Dansk Lymfødem Forening (the Danish patient organisation for lymphedema, DALYFO) and has already attended her first ePAG and PPL-WG meetings this month! We are very happy to have this dynamic and motivated patient advocate on our team and wish her a very warm VASCERNian welcome!? To read more about Pernille, take a look at our article here: https://vascern.eu/new-epag-co-chair-for-the-pediatric-and-primary-lymphedema-working-group/ EURORDIS - European Rare Diseases Organisation ... 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/