New #VASCERNSpotlights with Dr. Hans-Jurgen Mager, a pulmonologist from the Netherlands working at St. Antonius Ziekenhuis and member of the Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG)! ??
Dr. Mager tells us how his passion for HHT was born at the International HHT Conference in Curaçao in 1997, the work he has achieved in advancing diagnostic and therapeutic research in this rare disease since then, the importance of networking and the greatest accomplishments of VASCERN to date.
Read the full interview here: https://vascern.eu/vascern-spotlights-hans-jurgen-mager/
And we're letting you in on a secret but Dr. Mager will be giving a VASCERN webinar in May...stay tuned ?
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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/