Our Roadmap for PWS Research in Australia

PWS is a rare genetic, neurodevelopmental condition affecting approximately 1 in 15,000 babies..

It can be devastating. For someone with PWS, quality of life is poor at best, characterised by relentless hunger resulting in obesity, uncontrolled temper outbursts, cognitive impairment and mental illness. People with PWS typically require 24/7 support from a well resourced support team with specialist knowledge of the syndrome.

While there is no cure, and the existing treatment leaves many symptoms untouched, recent scientific advances are promising of a transformation in quality of life. Advances like this require significant time, resources, lobbying as well as national and international collaboration and co-ordination.

The Australian PWS Research Roadmap lays out our vision of how we can harness and direct the talent of leading experts to achieve a future where people with PWS live a better life.