Photos from VASCERN: The ERN on rare multisystemic vascular diseases's post
Members of the Pediatric and Primary Lymphedema WG (PPL WG) are in London today and tomorrow for their face-to-face meeting! :) Today, they kicked off their meeting with some interesting presentations, including one on patient perspective, by ePAG Co-Chair for PPL, Pernille Henriksen, and ePAG Deputy Co-Chair for PPL, Manuela Lourenço Marques They then used the rest of the day to progress on their various work packages! Way to go PPL-WG! ? Dansk Lymfødem Forening ANDLinfa Nederlands Netwerk voor Lymfoedeem & Lipoedeem - NLNet BeLymph ... 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/