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
Clinical experts and patient advocates gather in Heidelberg to turn discussion into action on global rare disease research
A global community of clinicians, patient leaders, regulators and researchers met in Heidelberg…
New IRDiRC PACC member – COMBINEDBrain
IRDiRC is pleased to announce that COMBINEDBrain, represented by Terry Jo Bichell (CEO),…
IRDiRC Releases Survey on Genetic Laboratory Standards
The International Rare Diseases Research Consortium Diagnostics Scientific Committee (DSC) has created a Survey on Regulation,…