HHT Ireland
❤?Valentine's Day is this Friday!!❤? Why not participate in the #myHHTvalentine campaign that involves giving the gift of blood while raising awareness for Hereditary hemorrhagic Telangiectasia (#HHT)! Donate blood, take a selfie with the hashtag #myHHTvalentine, learn about HHT (by watching one of our Pills of Knowledge videos such as: https://youtu.be/0YjWf7Agn40) and spread the word about this rare vascular disease! Because, single or taken, there's no greater gift than the gift of saving a life! ? HHT Onlus HHT Ireland HHT España Amro France HHT Oslers/HHT Sverige Cure HHT ... 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/