The number of Pediatric and Primary Lymphedema (PPL) patient advocates in the VASCERN European Patient Advocate Group (ePAG) is growing and we can't be happier! ???? Meet Eline Hoogstra from the Netherlands who represents Nederlands Netwerk voor Lymfoedeem & Lipoedeem - NLNet and who aims to "help improve the awareness of lymphedema and help empower more patients to take control!" Welcome Eline! ? Read more here: https://vascern.eu/new-epag-patient-advocate-for-pediatric-and-primary-lymphedema-from-the-netherlands/ Huidfonds #PPL ... 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/