News

Commentary on 10 years of IRDiRC available as full text

We are proud to announce that the commentary on 10 years of progress and challenges of IRDiRC that was previously published in the prestigious journal Nature 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 first decade (2011–2021). The commentary […]

Read More

Open letter: ECRD partner organisations call on the European Commission for a new European strategy on rare diseases

Following the 11th European Conference on Rare Diseases and Orphan Products (ECRD) that was held from June 27th to July 1st and was organized by EURORDIS and co-organized by Orphanet with IRDiRC serving as an Associate Partner, the involved parties came together to write an open letter to Commissioner Kyriakides of the European Commission, calling for a […]

Read More

IRDiRC Joint CA-SC: Interview with Dr. Christina Waters

With the occasion of the IRDiRC Joint Consortium Assembly – Scientific Committees Meeting, held on June 1st-2nd, 2022, in Paris, France, IRDiRC launched a series of interviews with its members on the importance of strong international collaboration in the rare disease community. We launch today the first video of the series with Dr. Christina Waters, […]

Read More

Nomination Call: Diagnostics Scientific Committee

IRDiRC has four Scientific Committees, one each for Diagnostics, Therapies, Interdisciplinary, and Regulatory aspects of rare diseases research. The Diagnostic Scientific Committee (DSC) identifies current and future bottlenecks to rare disease gene discovery, addresses challenges and roadblocks in rare disease diagnosis, and collaborates with international partners to develop tools and resources to facilitate genomic data discovery, analyses […]

Read More

IRDiRC releases State of Play 2019-2021

PARIS, FRANCE, JULY 5th, 2022: 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 […]

Read More

NINDS creates the Ultra-Rare Gene-based Therapy (URGenT) Network

The National Institute of Neurological Disorders and Stroke (NINDS) recently created the Ultra-Rare Gene-Based Therapy (URGenT) Network. The URGenT Network supports the development of state-of-the-art gene-based therapies for ultra-rare neurological diseases, which affect as few or fewer than one in fifty thousand people. It supports Investigational New Drug (IND)-enabling studies and planning activities for First-in-Human (FIH) […]

Read More

New IRDiRC Publication: Recommendations from the IRDiRC Working Group on Goal 3

IRDiRC is pleased to announce that the recommendations from the Working Group on Goal 3: Developing methodologies to assess the impact of diagnoses and therapies on rare disease patients have been published in the Orphanet Journal of Rare Diseases. Access the article here: https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02337-2 The Working Group characterized a set of metrics, tools and needs required […]

Read More

SAVE THE DATE: IRDiRC Conference and RE(ACT) Congress 2023

IRDiRC is pleased to announce that the next edition of the 5th IRDiRC Conference and 7th RE(ACT) Congress will be held in person in Berlin, Germany from March 15th – 18th, 2023. The joint event “IRDiRC Conference and RE(ACT) Congress 2023” aims to bring together scientific leaders, experts and young scientists from various breakthrough scientific fields to present cutting-edge research, exchange ideas, and […]

Read More