New patient advocate for Pediatric and Primary Lymphedema (PPL)
A very warm welcome to Manuela Lourenço Marques, who has joined VASCERN this month as the ePAG Deputy Co-Chair for the Pediatric and Primary Lymphedema Working Group (#PPL WG)! Manuela is President of ANDLinfa (the Portuguese National Association of Sufferers of Lymphatic Disorders) and we are very happy to have her on board to strengthen the patient voice for PPL! ?? Read more here:
https://vascern.eu/new-patient-advocate-for-pediatric-and-primary-lymphedema-ppl/ #ERNeu #PatientInvolvement 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/