News

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 […]

On 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 […]

IRDiRC 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 […]

The 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 […]

IRDiRC 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 […]