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
ERDERA Clinical Trial Call 2026
ERDERA will open its Clinical Trial Call 2026 (ECTC) on 1 July 2026 to support multinational, GCP‑compliant Phase…
Joint IRDiRC and ERDERA National Alignment Board Meeting
Researchers, policymakers, patient advocates, and healthcare leaders from across Europe and beyond convened…
New IRDiRC Publication – “Rare disease preparedness: the time is now”
A new publication from the International Rare Diseases Research Consortium, “Rare disease preparedness: the…