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 Regulatory Scientific Committee members

June 15, 2026

IRDiRC is delighted to announce the appointment of new members to the Regulatory…

IRDiRC at WODC USA 2026

June 12, 2026

The International Rare Diseases Research Consortium (IRDiRC) participated in the 2026 edition of…

Clinical Research Networks report now available!

June 11, 2026

The 2nd International Conference on Clinical Research Networks (CRNs), organised by the European Rare Diseases…