New scientific paper using Orphanet data provides prevalence figures on number of people living with a rare disease globally
➡18–30 million persons in the EU and 263–446 million persons worldwide are affected globally at any point in time by a Rare Disease: these are the figures detailed in a new scientific publication in the European Journal of Human Genetics - EJHG that details the first evidence-based evaluation of the cumulative global point prevalence of Rare Diseases using the epidemiological data from the Orphanet database! Read more about it here: https://vascern.eu/new-scientific-paper-using-orphanet-data-provides-prevalence-figures-on-number-of-people-living-with-a-rare-disease-globally/ Well done Orphanet and EURORDIS - European Rare Diseases Organisation for this important publication!? #RareDiseases ... 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/