That society recognise, as individuals, all people with Prader-Willi Syndrome and acknowledge and supports their right to participate in all facets of community life.
We are a self help group comprising people born with Prader-Willi Syndrome, parents, friends and interested professionals.
The Association is an ‘umbrella’ for state branches. At the national level, it is involved in issues that are relevant Australia wide. These include such things as the development and dissemination of educational material about the condition, liaison with Goverment on funding for pharmecutical treatments and the promotion of ethical research into management of the condition. The States provide support locally and may run their own activities.
The Association also works with overseas organisations that have similar objectives , to encourage research and enable exchange of ideas, experiences and management strategies.
The Association will get involved in any aspect of PWS care and support, that helps the person with Prader-Willi Syndrome (PWS) to live their life to the full, such as:
- improving management strategies to minimise negative impact of the characteristics of the syndrome
- educating the community, including receiving and imparting the latest information from global sources
- promoting of, and involvement in research to identify medical and other interventions
- fostering and developing quality services to satisfy the needs of those with PWS, their families and carers
- providing emotional and practical support to people with PWS, their families and carers
- liaising with the NDIA to ensure that they are aware of the nature of PWS, and the NDIS service needs of participants
PWSAA Advisory Board
The Management Committee has endorsed a Professional Advisory Board of people with expertise in PWS. It is the role of the Professional Advisory Board to:
- represent the Association and give expert opinion on behalf of the Association;
- help set national policies on issues such as education, employment, residential care etc;
- provide advice and policies on ethical issues;
- keep the Association informed of current research into PWS;
- in conjunction with the Association, review research proposals involving Australians with PWS;
- spread information about the syndrome among professionals; and
- help the Association lobby for research, services and facilities.
Chair of PWS Professional Advisory Board: Assoc Prof Peter Davies