10 August 2017
The International Rare Diseases Research Consortium (IRDiRC) has announces the new vision and goals for 2017-2027.
IRDiRC, officially launched in 2011, was formed to unite public and private sector funders of research, patient advocacy groups, and scientific researchers to advance rare diseases research worldwide. It was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare diseases by the year 2020. The last six years have seen considerable progress on these goals: the goal to deliver 200 new therapies was achieved in early 2017 – three years earlier than expected – and the goal for diagnostics is within reach. These accomplishments were celebrated at the 3rd IRDiRC Conference in Paris in February 2017.
The new vision, to 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, is as ambitious today as the original IRDiRC goals were in 2011.
In order to work towards this bold and ambitious vision, IRDiRC has set three goals for the next decade:
- 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.
- 1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options.
- Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patients
Like IRDiRC, RD-Connect is founded on the principles of international collaboration and data sharing, and we are excited to work with you over the next ten years to help the international rare disease community reach its new goals for the benefit of people with rare diseases worldwide.