VASCERN Spotlights: Dr Sophie Dupuis-Girod
It's here!!! ? Our new ⭐#VASCERNSpotlights⭐article features Dr. Sophie Dupuis-Girod, Co-Chair of the Hereditary Haemorrhagic Telangiectasia (HHT) WG, from Lyon, France! Read how she became interested in this rare vascular disease, her current research into treatments for HHT, her greatest hope for VASCERN and much more! Read it here: https://vascern.eu/vascern-spotlights-dr-sophie-dupuis-girod/ And don't forget that June is HHT Awareness Month! ❤? #HHTAwareness2019 HHT Onlus HHT España Amro France HHTHHT Italia Morbus Osler Selbsthilfe e.V. - www.morbus-osler.de HHT Ireland HHT Foundation International Filière de santé Maladies Rares FAVA-Multi ... 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/