Hereditary Haemorrhagic Telangiectasia from VASCERN HHT
The Hereditary Haemorrhagic Telangiectasia Working Group (HHT WG) held their monthly virtual meeting this morning! ?? Learn about their core values, their experience and all about the disease they cover, #HHT, in this collaborative Pill of Knowledge (PoK) video! Subtitles available in Danish, Dutch, French, German, Italian and Spanish! HHT Onlus HHT España HHT Italia Morbus Osler Selbsthilfe e.V. - www.morbus-osler.de Amro France HHT OSLER.DK/hht Denmark HHT UKHHT Ireland ... 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/