August 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 American Journal of Human Genetics. The scientific article was focused on genomic research done to collect knowledge about pathogenic DNA variants in people with not […]
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 measures in Australia, China, Japan, South Korea and Taiwan
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 measures in Australia, China, Japan, South Korea and Taiwan—along with the 2018 Asia-Pacific Economic Co-operation (APEC) Rare Disease Action Plan—reflect a growing recognition of the […]
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 part of the Forum
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 part of the Forum’s work to create actionable resources for policy-makers, healthcare professionals and leaders of the Fourth Industrial Revolution to navigate complex and sensitive […]
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; and, via application of advanced digital technologies that enable rare disease diagnosis / identification. The latter might require consolidation of existing fragmented efforts. In their […]
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; and, via application of advanced digital technologies that enable rare disease diagnosis / identification. The latter might require consolidation of existing fragmented efforts. In their […]
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 rare disease research that involves stakeholders from Africa, Asia, Australia, North America, and Europe. Click here to download the pdf version of the article.
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 rare disease research that involves stakeholders from Africa, Asia, Australia, North America, and Europe. Click here to download the pdf version of the article.
Read MoreAugust 4th 2020 Dr. Philip John (P.J.) Brooks has been elected as new Chair of the Interdisciplinary Scientific Committee (ISC). Dr. Brooks is a Program Director in the NIH National Center for Advancing Translational Sciences (NCATS) Office of Rare Diseases Research (ORDR). Dr. Brooks received his Ph.D. in neurobiology from the University of North Carolina at Chapel Hill. […]
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