IRDiRC was created in 2011 to facilitate global multi-stakeholder collaboration in rare disease research. IRDiRC has set the following three goals for the decade 2017-2027
- 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
The IRDiRC goals can only be achieved with fundamental changes in the way science is conducted, shared, and applied to the care of rare disease patients. IRDiRC members have committed to catalyze such changes and we hope that others will share and help with this commitment to action. It is time to build new bridges and raise the bar for rare diseases research worldwide.