#VASCERNDays2019 has officially come to an end! Thank you to our members, both healthcare professionals and patient advocates, for attending our 3rd annual seminar & board meeting! ?? We had two long days of productive meetings with lots of brainstorming, networking, sharing of best practices and advancing on many of our work packages! ???? We will share all the details (and lots more photos ?)soon but for now here's a great picture of our wonderful group in Brussels! #ERNeu #RareDisease #ShareCareCure Hevas VASCAPA.asbl Svenska Ödemförbundet Västra Götaland Dansk Lymfødem Forening AssoMarfans bindweefsel.be -Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen Deutsche Ehlers-Danlos Initiative e. V. Lymphangiomatosis & Gorham's Disease Alliance Amro France HHT HHT España Centro Malattie Genetiche Cardiovascolari - Pavia Marfan Hilfe - Deutschland e.V. Svenska Marfanföreningen Morbus Osler Selbsthilfe e.V. - www.morbus-osler.de @ANDlinfa ... 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/