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
2026 The third Hope for Rare Science Conference in Shanghai
The third Hope for Rare Science Conference will be held in Shanghai, China…
Exploring consultancy needs for rare disease research
The European Rare Disease Research Alliance (ERDERA) has re-opened its survey to better…
The CSNK2A1 Foundation Pilot Grant Program
The CSNK2A1 Foundation Pilot Grant Program, developed in collaboration with the Orphan Disease…