News

Ongoing Call for New ISC Members

IRDiRC’s Interdisciplinary Scientific Committee (ISC) is looking for new members to join forces for exciting projects! Four positions will be available starting May, and the committee is looking for experts with different backgrounds, ideally based in Middle East, Africa, North or South America: Phenotyping, Ontology and/or Digital Health expertise Patient Advocacy experience  Policy and/or Legal […]

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Future Opportunities – IHI Call 7

The Rare Disease Moonshot coalition encourages the rare disease research community to seize the opportunity presented by the Innovative Health Initiative’s call for proposal on Biomarkers, in alignment with the Research Needs Recommendations on Diagnosis In line with its mission of facilitating public private collaborations to address rare disease research “white spots”, the members of […]

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New IRDiRC Publication: “Advancing Diagnosis and Research for Rare Genetic Diseases in Indigenous Peoples”

IRDiRC has just announced the launch of the latest publication titled “Advancing Diagnosis and Research for Rare Genetic Diseases in Indigenous Peoples” now available on nature.com.Read the publication here: https://www.nature.com/articles/s41588-023-01642-1“The Indigenous populations taskforce brought together Indigenous and non-Indigenous rare disease leaders from across the globe to tackle the inequity in rare diseases diagnosis. The outputs […]

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Join IRDiRC’s Interdisciplinary Scientific Committee (ISC)

The Interdisciplinary Scientific Committee (ISC) would like to broaden the committee membership. As such, the ISC has four openings for new members, specifically encouraging participants from the following regions: Middle East, Africa, North & South America. Applications from other areas will also be considered depending on the expertise. We are looking for rare disease experts with different backgrounds:   Phenotyping, Ontology […]

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Symposium on “Gene therapy is coming of age”

The Institute for Interdisciplinary Innovation in healthcare is organizing a symposium on “Gene therapy coming of age”, taking place on 28 March, 2024, at the Palace of Academies in Brussels, Belgium. The symposium will include sessions on: Recent research and clinical advances Patient perspectives Panel debate on economic and societal challenges I3H Annual Lecture “Gene […]

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Rare Disease Day 2024: What IRDiRC member organizations are up to?

Join us in spreading awareness this Rare Disease Day.The International Rare Diseases Research Consortium (IRDiRC) is bringing together the efforts of member organizations. Check out this collaborative post showcasing their impactful contributions towards rare disease research this Rare Disease Day. Alexion AstraZeneca Rare Disease This year, to celebrate the Rare Disease Day, Alexion is hosting […]

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Fondazione Telethon announces commitment to make gene therapy for Wiskott-Aldrich Syndrome available to patients

Today, 28th of February, Fondazione Telethon (Italy) launched a Press Release to announce the agreement between Fondazione Telethon and Orchard Therapeutics, under which the foundation will work to make gene therapy for Wiskott-Aldrich syndrome available to patients. Read the Press Release here: https://www.telethon.it/en/stories-and-news/news/from-telethon-foundation/fondazione-telethon-announces-commitment-to-make-gene-therapy-for-wiskott-aldrich-syndrome-available-to-patients

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IRDiRC at 2024 WODC USA

As part of our commitment in advancing initiatives related to rare diseases, IRDiRC is a proud partner at the 2024 World Orphan Drug Congress USA. This will be a defining event for the rare disease and orphan drug space globally, bringing together top key opinion leaders from around the globe. The upcoming event will cover […]

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SANOFI highlights recent partnership to generate Real-World Evidence

The International Niemann-Pick Disease Registry (INPDR) announced a new collaboration with Sanofi, by giving controlled access to anonymized registry information via INPDR’s research “Gateway” platform. This collaboration will provide Sanofi with Real-World Evidence that will support evaluation and decision making on the use of olipudase alfa to manage Acid Sphingomyelinase Deficiency (ASMD). INPDR is the […]

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IRDiRC is now on LinkedIn!

We are excited to announce that IRDiRC is now officially on LinkedIn! Get connected at: https://www.linkedin.com/company/international-rare-diseases-research-consortium-irdirc/about/

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