Brains for Brain is glad to share the new vision and goals of the International Rare Diseases Research Consortium (IRDiRC).
IRDiRC teams up researchers and organisations investing in rare diseases research in order to achieve two main objectives – to deliver 200 new therapies for rare diseases and the means to diagnose most rare diseases by the year 2020. A new vision and a new set of goals for 2017-2027 has been finalised recently .
The new 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.
In order to work towards this bold and ambitious vision, IRDiRC has set three goals for the next decade:
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
2. 1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options.
3. Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patients
for further information see the