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
IRDiRC announces new members to its Diagnostics Scientific Committee
The International Rare Diseases Research Consortium announces two new members for its Diagnostics…
New IRDiRC Publication: Engaging children, adolescents and young adults living with rare diseases as research partners: practical considerations for meaningful involvement
The International Rare Diseases Research Consortium (IRDiRC) Working Group on the Engagement of Young People Living with Rare Diseases in Therapy Development has published a perspective article in Frontiers in Pediatrics entitled…
Registrations are now open for RE(ACT) Congress 2027!
What can happen when researchers, clinicians, patient advocates, policymakers, industry experts, and emerging…