Gastrointestinal Complications in vascular Ehlers-Danlos Syndrome (vEDS)
It's Monday! :) Let's start off the week with one of our educational pills of knowledge (PoK) videos! This one features Dr. Salma Adham (from our Medium-Sized Arteries Working Group) talking about the gatrointestinal complications seen in vascular Ehlers-Danlos syndrome (#vEDS)! Very informative video and a great resource for doctors unfamiliar with this rare disease. Subtitles available in Dutch, French, German and Italian! Deutsche Ehlers-Danlos Initiative e. V. bindweefsel.be -Vlaamse Vereniging voor Erfelijke Bindweefselaandoeningen Afsed Association Française des Syndromes d'Ehlers Danlos AISED ONLUS #ERNeu #ShareCareCure ... 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/