News- EIKRA

How Newborn Liver Cells Shape Growth and Future Treatments

IRDiRC Funders Constituent Committee (FCC) Member Fondazione Telethon is pleased to announce a new discovery from San Raffaele Telethon Institute for Gene Therapy (SR-Tiget), which reveals the key liver cells driving organ growth and advancing pediatric gene therapy. Published in the Journal of Hepatology, the study reveals that a minority of liver cells in newborns […]

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IRDiRC at the Multi-Stakeholder Workshop on Prioritization of Rare Diseases for ATMP Development

IRDiRC members Marjon Pasmooij (Head of the Science Department at the Dutch Medicines Evaluation Board, and member of Therapies Scientific Committee), Mary Wang (Director Patient Engagement at Genespire, and member of Interdisciplinary Scientific Committee) and scientific project manager Alexandra Tataru participated in the Multi-Stakeholder Workshop on Prioritization of Rare Diseases for ATMP Development, organized by […]

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Second International Conference on Clinical Research Networks for Rare Diseases

The 2nd International Conference on Clinical Research Networks for Rare Diseases, organised by ERDERA, Rare Diseases International and IRDiRC, will take place in hybrid format from the 9-10 of December, 2025 in Heidelberg, Germany. Under the theme “Mobilising the Global Rare Disease Clinical Research Ecosystem”, this global event will gather experts and stakeholders from across […]

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New Education Resource for Rare Disease Awareness in Schools

The Rare Care Centre (Perth, Western Australia), in collaboration with Syneos Health Communications, has launched a powerful new animation and e-learning resource designed to help educators better support students living with rare diseases. While each rare disease may affect few, collectively they impact over 300 million people globally — with more than 70% beginning in […]

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New Publication – “Undiagnosed Hackathons: Ending the diagnostic odyssey for individuals with rare disease”

IRDiRC Chair and members, Dr. David Pearce, Dr. Gareth Baynam, Helene Cederroth and Mikk Cederroth have co-authored a new publication on the importance of the Undiagnosed Hackathon in finding new ways to diagnose individuals living with a longstanding medical conditions without a diagnosis. 350 million people live currently with an undiagnosed disease worldwide. While genome […]

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14th UDNI Conference 2025

The 14th edition of the Undiagnosed Diseases Network International Conference will take place in Rio de Janeiro, Brazil, on October 28-31. The Undiagnosed Diseases Network International (UDNI) was established in 2014 as a collaborative initiative spanning multiple countries with the primary mission to improve diagnostic rates for individuals living with undiagnosed conditions. Since its inception, […]

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New Funding Opportunity from Cerebrum DAO

Cerebrum DAO is a community-powered network organization dedicated to sourcing, funding, and translating research that advances solutions to extend healthy brain lifespan. Their current research priorities include: Cerebrum DAO offers project funding of up to $200.000, including overhead. To learn more or apply for funding, visit cerebrumdao.com/researchers or contact Michele Gallia at michele@cerebrumdao.com.

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ANR Generic Call for Proposals 2026

ANR Generic Call for Proposals 2026 (AAPG 2026) is the main national funding call from French National Research Agency, having the goal to help the scientific community in public and private sectors to fund their research projects. Key facts about this call:– Open to all scientific communities, with 57 research themes (38 research themes covering […]

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