The iHope™ Genetic Health (iGH) program launched by Genetic Alliance and supported by Illumina aims to expand access to whole-genome sequencing to low- and middle-income communities around the world, with more than one-third of funds being allocated to patients in Africa. iGH is requesting information from stakeholders to formulate a Request for Proposals (RFP) from laboratories […]
Read MoreOn February 7th 2022, Horizon Magazine, issued by the European Commission’s Directorate-General for Research and Innovation, published an interview with past and present IRDiRC leadership. In view of Rare Disease Day on February 28th, the magazine has dedicated its Monthly Focus to developments in rare disease research and innovation in Europe and beyond, with a […]
Read MoreIRDiRC member Dr. Anneliene Jonker, Vice Chair of the Therapies Scientific Committee (TSC) of IRDiRC, has been interviewed extensively for an article published in the February 2022 issue of Medical Technology magazine. The article, titled “Medical devices for rare diseases: the unmet need”, presents the goals of the IRDiRC Working Group on MedTech for Rare […]
Read MoreThe Therapies Scientific Committee (TSC) is establishing a Task Force on Drug Repurposing Guidebook to help developers (of all kinds) navigating the rare disease landscape and identifying specific tools and practices of relevance for repurposing projects. The creation of the Development Guidebook will focus on repurposing approaches, following the same successful methodology used for the […]
Read MoreIRDiRC is pleased to announce the election of Dr David Pearce, President of Innovation, Research & World Clinics, Sanford Health (USA), as the next Chair of the IRDiRC Consortium Assembly. Dr Pearce is replacing Dr Lucia Monaco, ex Lead of the Research Impact and Strategic Analysis team at Fondazione Telethon (Italy). Ms Samantha Parker, Chief Patient Access Officer at InnoSkel […]
Read MoreWe are proud to announce the publication of a commentary on 10 years of progress and challenges of IRDiRC in the prestigious journal Nature Reviews Drug Discovery. The article summarizes IRDiRC’s vision and goals and highlights its achievements and prospects after its first decade (2011–2021). The commentary has been authored by Lucia Monaco (Consortium Assembly […]
Read MoreThe Therapies Scientific Committee (TSC) is establishing a Task Force to characterize specific commonalities amongst a large group of “disregarded” rare diseases, with the potential secondary aims to identify removable roadblocks that may foster future research and development. The PLUTO project aims at using an integrated database search approach to: identify and classify the groups of rare […]
Read MoreThe International Rare Diseases Research Consortium (IRDiRC) has published the results of its COVID-19 survey in the Rare Disease and Orphan Drugs Journal. The ambitious goals set by IRDiRC by 2027 to fulfill the vision of providing diagnosis and treatments to rare diseases (RDs) patients within one year of coming to medical attention have been challenged […]
Read MoreThe Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) is pleased to announce availability of funds for to support natural history studies for rare diseases and conditions. These studies are intended to provide acceptable data to the FDA that will substantially contribute to the approval of new products, or new indications for already marketed […]
Read MoreFollowing a sustained campaign by rare disease patient advocacy organisations such as Rare Diseases International and with the support of several Member States, the United Nations (UN) General Assembly has formally adopted on December 16th 2021 with the consensus of all 193 UN Member States the UN Resolution on Addressing the Challenges of Persons Living with a Rare Disease and their Families. This is […]
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