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About Us

You are not alone! We are on this PWS Journey together. Prader Willi Syndrome Australia strives to raise awareness of Prader-Willi syndrome across Australia. We are proudly building an inclusive community that places people living with PWS at the heart of all we do. Our parent led, person and family support organisation is committed to improving lives and maximising outcomes for individuals. We strive to uphold the UN Convention for the Rights of People with Disabilities by creating opportunities and developing resources that support integration and maximise choice. We regularly liaise with people living with PWS, our families and professionals, the Prader Willi Research Foundation of Australia, our Asia Pacific neighbours and PWS Associations around the world, including working closely with the International Prader Willi Syndrome Organisation.

Our Vision: That all people living with Prader-Willi sydrome (PWS) be recognised and acknowledged as individuals with rights to participate in all facets of community life.
PWS Australia (PWSA) envisages a world where every person living with PWS has equal access to quality services that enable them to live happy and productive lives, regardless of their postcode.

Our Mission: To simplify the complexity of life with Prader-Willi syndrome by connecting, educating, advocating and transforming lives together.

Our Values: Integrity, Collaboration, Diversity, Empathy, Leadership.

We believe that, with skilled and informed support and treatment, people living with PWS can become valued members of their community, achieving their goals and living their best lives.

We are excited that the information is available in over 100 languages by clicking the Google Translate button above (it won’t be perfect). Also, you can save, copy, share or print a hard copy of these brochures (subject to your printer settings).

Should you wish to re-publish the resources, we ask that you please attribute Prader-Willi Syndrome Australia Ltd as your original source.

Our goals

The goals of PWSA are built on three pillars:

  • Education and information
  • Advocacy and support for research
  • Connections and community

Examples of actions include:

  • Enabling a voice – ‘Our Way of Life Australia’ is a group of leaders living with PWS that are encouraged to ‘speak up, speak out’ regarding issues that are important to them.
  • Postcode-free delivery – distance should not be a barrier; we strive to deliver technology enabled training and support services wherever the person lives.
  • Advocacy – At a systemic level by contributing to consultations, including building family capacity; Together we are stronger – developing and sharing resources and knowledge to educate and advocate for our community.
  • Stakeholder engagement – we strive to work alongside all organisations that are involved in the care, treatment and support of people living with PWS.
  • Local and national focus – we value and continue to seek the involvement of our families and the broader community to enable best outcomes.

Our people

Run almost exclusively by volunteers, PWSA has a Board of Directors that are elected by the Members, a Project and Operation’s Manager (paid position), Our Way of Life Australia consultative committee, Clinical and Professional Provider consultative panel, PWSA IPWSO representatives and many valued volunteers

Become a member

Consider becoming a member of Prader-Willi Syndrome Australia (PWSA). We strive to make life better for people living with Prader-Willi syndrome. We do this through a variety of methods such as running the OWLA group to give a voice to people living with PWS, delivering resources for you to use, and/or share with others in the support team, holding conferences and partnering with other national  organisations on project. PWSA puts forward the needs of people living with PWS to various consultations, including those run by the NDIS. We value your input as we give expert, lived-experience advice to providers, mainstream organisations in health and education systems, and regulators. We will keep you updated and include you in these initiatives and events. Members can access online training for their support ‘workers, teachers, care team and others.

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