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
Call for Members : 2023 IRDiRC Task Forces
IRDiRC launches the Call for Members for the four new Task Forces of…
Rare Disease Day at NIH 2023
The National Institutes of Health (NIH)’s National Center for Advancing Translational Sciences (NCATS)…
Orphadata Science granted Global Core Biodata Resource status
On 15 December 2022, Orphadata Science was awarded Global Core Biodata Resource status,…