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
Newborn Screening I Special Edition available as eBook
IRDiRC’s Special Edition on “Newborn Screening I – Real World Applications and Technologies” has been completed and…
16th ICORD Annual Meeting
We are delighted to share that Dr. Dave Pearce, IRDiRC Chair, participated in-person…
EJP RD – Data Resources and Tools Knowledge Awareness Survey
We are thrilled to announce the launch of the European Joint Programme on…