The Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Shared Molecular Etiologies Underlying Multiple Rare Diseases aiming to address and document the existing challenges in adapting the basket […]
Read MoreThe Diagnostics Scientific Committee (DSC) is establishing a Task Force on the Integration of New Technologies for the Diagnosis of Rare Diseases. This activity proposes to identify the most clinically […]
Read MoreWe are pleased to announce that FDA will be holding a virtual public meeting on Friday, March 5, 2021, from 9:00 a.m. to 4:00 p.m. EST to highlight strategies to support […]
Read MoreNovember 9th 2020 The International Rare Diseases Research Consortium (IRDiRC) and The BLACKSWAN Foundation alongside with the European Joint Programme on Rare Diseases (EJP RD) are hosting a joint online event IRDiRC […]
Read MoreAugust 25th 2020 GEnome Medical alliance Japan (GEM Japan), a Driver Project of the Global Alliance for Genomics and Health (GA4GH), has released GEM Japan Whole Genome Aggregation (GEM-J WGA) — a first-of-its-kind open-access variant […]
Read MoreAugust 19th 2020 New paper from Dr Gareth Baynam and other authors on diagnostics in rare diseases focused on Indigenous and other minority population groups has recently published by The […]
Read MoreThe Economist: SUFFERING IN SILENCE: ASSESSING RARE DISEASE AWARENESS AND MANAGEMENT IN ASIA-PACIFIC
August 13th 2020 The collective challenge of rare diseases has risen up the policy agenda in both the AsiaPacific region and globally. Various new and revised health and social system […]
Read MoreAugust 12th 2020 World Economic Forum has recently developed this report on accessing sensitive health data at scale in order to advance research, innovation and patient outcomes. This paper is […]
Read MoreAugust 11th 2020 The overall objective of this call topic is to shorten the path to RD diagnosis by using newborn/paediatric (infants during their first weeks of life) genetic screening; […]
Read MoreThe Scientific Committee of Innovative Medicine Initiative (IMI), published a very interesting recommendation paper on future research needs regarding rare diseases. IRDiRC has been mentioned as a global consortium in […]
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