The International Rare Diseases Research Consortium (IRDiRC) has just announced their new vision and goals for 2017-2027. Members of the consortium will now set their sights on achieving even more ambitious goals to improve the health of people living with rare diseases.
The consortium aspirations for 2017-2027:
- 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.
WA Health has helped champion the success of IRDiRC, whose achievements have been so remarkable that they have had to review their original vision and goals three years ahead of plan. Through the Public Health Division, WA Health is a founding member of IRDiRC and represents Australia in the consortium.
Past progress and future actions of IRDiRC are highlighted in three recent academic papers, all of which have been led by WA Health staff, including Office of Population Health Genomics Director Professor Hugh Dawkins, and Clinical Associate Professor Gareth Baynam who heads the WA Register of Developmental Anomalies and the Undiagnosed Diseases Program of WA.
- Nature Commentary: http://www.nature.com/uidfinder/10.1038/548158c
- CTS Past Perspective: http://onlinelibrary.wiley.com/doi/10.1111/cts.12501/full
- CTS Future Perspective: http://onlinelibrary.wiley.com/doi/10.1111/cts.12500/full
IRDiRC was formed in 2011 to foster international relationships in the rare diseases research community and accelerate research through collaborations. Since its inception, IRDiRC has seen considerable success achieving its first two goals: the goal to deliver 200 new therapies was achieved earlier this year, and the goal to diagnose most rare diseases by 2020 is within reach.
As evident through IRDiRC’s achievements, the international rare diseases research community is eager to share knowledge and experience, and work collaboratively across borders to bring diagnoses and therapies to patients. These new goals can only be achieved with fundamental changes to the way science is conducted, shared and applied to the care of rare disease patients. IRDiRC members are committed to bring about such changes and we hope that others will share and help with this commitment to action. Now is the time to build new bridges and raise the bar for rare diseases research around the world.
To learn more about how IRDiRC is accelerating rare diseases research progress to improve health for people living with rare diseases, please visit www.irdirc.org<http://www.irdirc.org
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