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

New IRDiRC Publication – “Rare disease preparedness: the time is now”

May 29, 2026

A new publication from the International Rare Diseases Research Consortium, “Rare disease preparedness: the…

Innovative Models Reshaping Access to Diagnosis, Treatment and Care – Practical examples and global case studies

May 28, 2026

Scientific and medical advances in rare diseases continue to accelerate — but equitable…

New IRDiRC Publication: “Medical device development and innovation for rare and pediatric populations: a global landscape overview”

May 12, 2026

Medical devices for rare diseases are becoming increasingly important as healthcare innovation expands…