VASCERN Spotlights: Pernille Henriksen
⭐"I trust that the processes set in motion and the outstanding work of the experienced and capable people working within VASCERN and the European Reference Networks, including the patient advocates, will lead to the fulfillment of the overall objectives of the ERNs."⭐
The first #VASCERNSpotlights article of 2020 is now available!! In this edition we talk to Pernille Henriksen, our European Patient Advocacy Group (ePAG) co-chair for the Primary and Pediatric Lymphedema Working Group (PPL WG), who joined VASCERN in 2019! Pernille talks about primary lymphedema, her role in VASCERN and her most memorable moments so far! Read her full interview here: https://vascern.eu/vascern-spotlights-pernille-henriksen/ Dansk Lymfødem Forening 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/