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
NINDS creates the Ultra-Rare Gene-based Therapy (URGenT) Network
The National Institute of Neurological Disorders and Stroke (NINDS) recently created the Ultra-Rare…
Meeting Summary of the RDI Informal Side-Event to the 75th World Health Assembly
Rare Diseases International (RDI) would like to thank all who attended the RDI Informal…
New IRDiRC Publication: Recommendations from the IRDiRC Working Group on Goal 3
IRDiRC is pleased to announce that the recommendations from the Working Group on Goal…