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People living with PWS have different communication needs and reactions. Integration with mainstream community organisations makes for a good life. Individuals may be challenged by service interactions with your business and will benefit from your understanding of PWS.

In hospital

Experience has demonstrated that individuals living with PWS can be difficult to diagnose and challenging to treat. They respond differently to medical interventions. Professionals will find medical alerts and resources that have been developed by some of Australia’s leading hospitals.


PWS is complex. PWSA fully endorses the UN Charter of the Rights of People with Disabilities and where possible, the elimination of restrictive practices. However, research has shown that due to altered brain function in PWS, total removal of restrictive practices may result in extreme ill health, shortened life span and premature death.

First responders

Our community values and supports all first responders. Responding to a call that involves a person living with PWS can be challenging. Determining individual ‘capacity’ is problematic, together with recognising and understanding syndrome related ‘behaviours of concern’ that may be displayed in an emeregncy. These resources guide an effective response.

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