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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

Showcase Your Work at ECRD 2026 — Europe’s Largest Rare Disease Event

November 6, 2025

Are you advancing research, shaping policy, or driving advocacy for people living with…

Highlights from the World Orphan Drug Congress 2025

November 3, 2025

The World Orphan Drug Congress 2025 brought together leading voices in the rare disease community…

New IRDiRC Publication – Regulatory sandboxes: A new frontier for rare disease therapies

October 10, 2025

Regulatory sandboxes are emerging as a powerful tool to accelerate innovation in healthcare,…

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IRDiRC, Fondation Maladies Rares 96 rue Didot, 75014 Paris, France

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DISCLAIMER

This site is provided on an “as available” basis. While IRDiRC believes the content on this site to be correct, IRDiRC makes no representations or warranties regarding the accuracy, completeness, currency or intellectual property rights of or relating to any content displayed. Disclaimer

FUNDING

The Scientific Secretariat of IRDiRC is supported by the European Union’s Horizon Europe research and innovation programme, through the European Rare Diseases Research Alliance (ERDERA), under grant agreement N°101156595. Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Union or any other granting authority, who cannot be held responsible for them.

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