WORLD ORPHAN DRUG CONGRESS USA WEBINARS organizes this event scheduled on Wednesday April 22, 12 – 1pm EDT. There are many unprecedented challenges facing the rare disease community due to COVID-19 — maintaining patient access to rare disease therapies, managing delays in clinical trials, and ensuring patient support are all top of mind. Join this webinar […]
Read MoreMARRVEL (Model organism Aggregated Resources for Rare Variant ExpLoration) is a search engine that collects data from a number of human genomics and model organism genetics databases and displays it in a rapid user-friendly format. It was created in 2017 by a group of researchers in the Undiagnosed Disease Network at Baylor College of Medicine as […]
Read MoreThe Chair of the Consortium Assembly, Dr Lucia Monaco, has been recently interviewed by Raconteur for its Rare Diseases Report published by The Times – The Sunday Times- on its July edition. Dr Monaco interview was one of the nine articles chosen for this focus and she well highlighted the relevance of “the fight for equal access […]
Read MoreThe Interdisciplinary Scientific Committee (ISC) is establishing a Task Force on Clinical Research Networks for Rare Diseases aiming to map and analyse the existing ecosystem of national/supranational clinical research networks, and develop policy recommendations on guiding principles for an international framework of collaboration of these networks. The ISC is looking for members to populate this […]
Read MoreWe are pleased to announce the election of Dr Durhane Wong Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD), as the Chair of the Patient Advocacy Constituent Committee (PACC). Durhane Wong Rieger, PhD, is the President & CEO of the Canadian Organization for Rare Disorders (CORD). She is also the President & […]
Read MoreThe Diagnostic Scientific Committee (DSC) is establishing a Task Force on to address barriers to the diagnosis of rare diseases for Indigenous peoples, so as to help address critical areas that will need to be served if IRDiRC Goal 1 is to be met. The Indigenous Population Task Force will bring together the community addressing this challenge […]
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Dimply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dumy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries.imply dummy text of the printing and typesetting industry […]
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Dimply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dumy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries.imply dummy text of the printing and typesetting industry […]
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Dimply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dumy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries.imply dummy text of the printing and typesetting industry […]
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Dimply dummy text of the printing and typesetting industry. Lorem Ipsum has been the industry’s standard dumy text ever since the 1500s, when an unknown printer took a galley of type and scrambled it to make a type specimen book. It has survived not only five centuries.imply dummy text of the printing and typesetting industry […]
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