“What I have appreciated the most is the welcoming attitude from the physicians and their appreciation for patient advocacy work and what our involvement brings to the European Reference Networks. I have appreciated this attitude a lot. I was also really impressed by the other patient advocates already participating in the network when I joined. It is a true joy to work with such dedicated and professional patient advocates!”
Our first VASCERN Spotlights article of 2019 is out and features Lise Murphy, our European Patient Advocacy Group (ePAG) Co-Chair for the Heritable Thoracic Aortic Diseases Working Group (HTAD-WG)! Lise is from Sweden and talks about her patient organisation, Svenska Marfanföreningen, Marfan syndrome and the upcoming "3 a week campaign", and her hopes for the ERNs. Read the full interview here: https://vascern.eu/vascern-spotlights-lise-murphy/ #ERNeu Marfan Europe Network 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/