Welcome To IRDiRC

Our vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention

Goal 1

All patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their disorder is known in the medical literature; all currently undiagnosable individuals will enter a globally coordinated diagnostic and research pipeline

Goal 2

1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options

Goal 3

Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patients

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Latest News

A stronger, more coordinated Europe for people living with rare diseases

October 29, 2026

On 15 October, EURORDIS-Rare Diseases Europe launched “A European Blueprint for Rare Diseases”,…

New Publication: “Unveiling the depth of the knowledge gap in the Universe of Rare Diseases: the PLUTO mission”

October 27, 2026

IRDiRC is pleased to announce the release of a new publication in the…

Applications Open for RDI Youth Leadership Programme 2027–2028

October 26, 2026

On behalf of Rare Diseases International (RDI), member of IRDiRC Patient Advocates Constituent…