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
Latest News
Showcase Your Work at ECRD 2026 — Europe’s Largest Rare Disease Event
Are you advancing research, shaping policy, or driving advocacy for people living with…
Highlights from the World Orphan Drug Congress 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
Regulatory sandboxes are emerging as a powerful tool to accelerate innovation in healthcare,…