“Yakup’s Journey to Hope” was created in collaboration with the GA4GH Driver Project and The European Joint Programme on Rare Diseases (EJP RD). Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. The video premiere was at the GA4GH plenary 2019. Patient can […]
Read MoreThe goal is to create a unique platform that does not exist anywhere else, a European multi-sector Partnership for health innovation Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda […]
Read MoreDr. Aartsma-Rus is a professor in translational genetic and a member of IRDiRC Therapies Scientific Committee. In this video she tells us why IRDiRC is needed in the rare disease field and why it is important have different stakeholders collaborating. IRDiRC does it and all its members are committed to reach the new IRDiRC goals […]
Read More11 – 14 March 2020. Berlin, Germany EARLY REGISTRATION IS OPEN, SUBMIT YOUR ABSTRACT! The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, are glad to announce the RE(ACT) Congress and IRDiRC Conference 2020 – Berlin, Germany 11-14 March.This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together […]
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 International Rare Diseases Research Consortium (IRDiRC)’s report “State of Play of Research in the Field of Rare Diseases: 2015-2018” is a compilation of information published in scientific journals and press releases over the period of September 2015 to June 2018. The report aims to inform stakeholders at large of developments in the field of […]
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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