IRDiRC is proud to announce that, as one of the outcomes of the MedTech for Rare Diseases Working Group led by IRDiRC members Anneliene Jonker and Marc Dooms, the Orphanet Journal of Rare Diseases has decided to focus a thematic issue on the questions regarding the research and development of orphan devices and medical technologies that…
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce that the commentary on 10 years of progress and challenges of IRDiRC that was previously published in the prestigious journalNature Reviews Drug Discovery is now fully available for reading. The article summarizes IRDiRC’s vision and goals and highlights its achievements and prospects after its…
The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce today the release of its Rare Diseases Research Initiatives State of Play 2019-2021 Report. This report is based on scientific articles and press releases published between 2019 and 2021; it seeks to inform stakeholders and the rare diseases community about the developments and observed…
EJP RD is pleased to announce that the next edition of the 7th RE(ACT) Congress and 5th IRDiRC Conference will be held in person in Berlin, Germany from March 15th – 18th, 2023. The joint event « RE(ACT) Congress and IRDiRC Conference 2023 » aims to bring together scientific leaders and experts and young scientists from various…
International Rare Diseases Research Consortium (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 Diseases, the…
The Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC) 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…
The International Rare Diseases Research Consortium (IRDiRC) is 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…
The Therapies Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC) 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 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 by the COVID-19…
The Funders Constituent Committee of the International Rare Diseases Research Consortium (IRDiRC) has set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors. This will be accomplished through survey and…