IRDiRC
International Rare Diseases Research Consortium
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Latest posts
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A stronger, more coordinated Europe for people living with rare diseases
On 15 October, EURORDIS-Rare Diseases Europe launched “A European Blueprint for Rare Diseases”, setting out the rare disease community’s proposals for the priorities and implementation of a future EU Action […]
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New Publication: “Unveiling the depth of the knowledge gap in the Universe of Rare Diseases: the PLUTO mission”
IRDiRC is pleased to announce the release of a new publication in the Orphanet Journal of Rare Diseases, “Unveiling the depth of the knowledge gap in the Universe of Rare […]
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Applications Open for RDI Youth Leadership Programme 2027–2028
On behalf of Rare Diseases International (RDI), member of IRDiRC Patient Advocates Constituent Committee, we are delighted to announce the opening of the RDI Youth Leadership Programme 2027–2028. Over 2 […]
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New IRDiRC Publication: Leveraging precompetitive collaborations for rare diseases
Rare diseases often face significant challenges in drug discovery and development, including limited patient populations, fragmented data, and high research costs. A recent editorial in Drug Discovery Today highlights the potential of […]
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IRDiRC announces new members to its Diagnostics Scientific Committee
The International Rare Diseases Research Consortium announces two new members for its Diagnostics Scientific Committee (DSC). The Diagnostics Scientific Committee brings together international experts in clinical genetics, genomics, bioinformatics, molecular […]
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New IRDiRC Publication: Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement
The International Rare Diseases Research Consortium (IRDiRC) Working Group on the Engagement of Young People Living with Rare Diseases in Therapy Development has published a perspective article in Frontiers in Pediatrics entitled “Engaging Children, Adolescents and Young Adults…
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Registrations are now open for RE(ACT) Congress 2027!
What can happen when researchers, clinicians, patient advocates, policymakers, industry experts, and emerging voices come together to advance rare disease research? From 10–12 March 2027, the rare disease community will […]
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FDA Approves First Gene Therapy for Pediatric Patients with Sanfilippo Syndrome Type A
The U.S. FDA has approved Fayuvi (rebisufligene etisparvovec-hopf), the first treatment specifically approved for pediatric patients with Sanfilippo syndrome type A (MPS IIIA), a rare and progressive genetic disorder affecting […]
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Beacon for Rare Diseases – Rare Insights Study
Beacon for Rare Diseases has launched Rare Insights – a ground-breaking study exploring the value and impact of rare disease patient groups, alongside the challenges they face. We need your […]
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New members to IRDiRC’s Interdisciplinary Scientific Committee
The International Rare Diseases Research Consortium is pleased to welcome to its Interdisciplinary Scientific Committee (ISC) two new members: Elizabeth Hart – Associate Director of Rare Disease (Acting), Center for […]