August 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. […]
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. […]
Read MoreJune 25, 2020 To further encourage the development of treatments for rare diseases, EMA will waive all fees for scientific advice for academia developing orphan medicines.The academic sector plays an important role in the development of innovative medicines. Their scientific research is often at the source of novel methodologies and innovative medicines with a potential to benefit patients with rare diseases.Early […]
Read MoreJune 25, 2020 To further encourage the development of treatments for rare diseases, EMA will waive all fees for scientific advice for academia developing orphan medicines.The academic sector plays an important role in the development of innovative medicines. Their scientific research is often at the source of novel methodologies and innovative medicines with a potential to benefit patients with rare diseases.Early […]
Read MoreJune 23rd 2020 The Food and Drug Administration
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