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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

IRDiRC at World Orphan Drug Congress USA

April 24, 2025

“Breaking down silos and fostering collaboration to help rare disease patients” – The…

The French National Research Agency announces the launch of “Choose France for Science platform”

April 24, 2025

The French National Research Agency (ANR) announces the launch of the “Choose France for…

Training event on paediatric clinical research for young people living with a rare disease – Open call for participants

April 10, 2025

The European project ERDERA has opened a call to select patients with a…