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
International Conference on Clinical Research Networks for Rare Diseases
The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on…
Report on Health Technology Assessment and reimbursement of rare diseases treatment
IRDiRC is delighted to share the release of Connecting the dots: Embedding progress…
IRDiRC Announces Creation of Regulatory Scientific Committee to Tackle Regulatory Challenges in Rare Diseases Research – Press Release
22 September 2022 – Paris, France – IRDiRC, a global collaborative initiative with the…