IRDiRC proudly announces the publication of the manuscript “Targeting shared molecular etiologies to accelerate drug development for rare diseases“ online, today. The manuscript is published in the EMBO Molecular Medicine Journal and freely accessible online at the following link: https://www.embopress.org/doi/full/10.15252/emmm.202217159.
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The International Rare Diseases Research Consortium (IRDiRC) announces new leadership changes in its Funders Constituent Committee (FCC). Dr. Adam Hartman (Program Director at the National Institute of Neurological Disorders and Stroke (NINDS), USA), FCC Chair, and Dr. Catherine Nguyen (Director at the Thematic Institute of Genetics, Genomics, and Bioinformatics, INSERM, France), FCC Vice Chair, have […]
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The Therapies Scientific Committee (TSC) would like to broaden the committee membership, to represent the worldwide rare disease therapies community in its full width, from early innovation towards regulatory approval and therapeutic support of patients. As such, the TSC has three openings for new members, specifically encouraging participants from the following regions: Africa, Asia, Australasia […]
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IRDiRC is thrilled to present a new video from the Interview Series with its members. This month we have in the spotlight David Adams, IRDiRC Diagnostics Scientific Committee (DSC) Chair and Deputy Director of Clinical Genomics at NHGRI/NIH (USA). Check out David’s answers on what IRDiRC means for him and the role it plays for […]
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Prof. Guillaume Canaud (Necker Hospital for Children, AP-HP, France) offered a great presentation on “Targeted therapy for patients with PIK3CA-related overgrowth spectrum“ at the RE(ACT) Congress in Berlin (Germany). Check out his impressions on the IRDiRC Conference x RE(ACT) Congress at the following link: here.
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The European Partnership on transforming health and care systems (THCS), a Cofund action under the Horizon Europe Programme designed to support coordinated national and regional research and innovation programmes along with capacity building, networking, dissemination and other key activities to support health and care systems transformation, will launch its first Joint Transnational Call (entitled “Healthcare […]
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Solve-RD, a research project funded by the European Commission for five years (2018-2022), having the ambitious goals set out by the International Rare Diseases Research Consortium (IRDiRC) to deliver diagnostic tests for most rare diseases by 2020, invites all its partners to attend the Solve-RD Final Meeting 2023 in Prague (Czech Republic) or online. The […]
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As Rare Disease Day 2023 is approaching, the Chinese Organization for Rare Disorders invites you to attend the Global Workshop on Access to Rare Disease Diagnosis and Treatment, on 28th February 2023, at 19:00-22:30 Beijing time. Founded in 2013 by Kevin HUANG, the Chinese Organization for Rare Disorders (CORD) functions as a platform, hub and advocacy NGO […]
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IRDiRC launches the Call for Members for the four new Task Forces of the 2023 Roadmap. Check out the newly approved Task Forces: Funding Models to Support the Spectrum of Rare Disease Research and Development The overall objective of this Task Force is to identify how different types of funders make decisions about when to […]
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IRDiRC is glad to partner with Alexion’s annual Rare Conversations conference, “Rare Disease Policies: Pioneering the way towards a resilient ecosystem”, that we will partner. The event will reflect on several aspects that may be included in the new legislative framework, trying to answer the question: How to create a resilient rare disease ecosystem for the […]
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