The Prader-Willi Syndrome Association (PWSAA) website holds a variety of information. Some other information is on expert websites from around the world.
On this page are resources that have been created by PWSAA or its State branches.
National Disability Insurance Scheme Guides
- For providers – Understanding PWS when accessing the community
- For providers – Supporting people with PWS in residential care
- For providers – Supporting people in the workplace
- For parents – Preparing to meet the NDIA
- For participants – Creating my NDIS Plan
- For NDIS planners – Planning for PWS
- For NDIA Tech team – Assessing participants
Publications
Australian Medical Alerts Booklet to be shared with anyone supporting those with PWS. This booklet has been reprinted with permission from the USA PWS Association. It is part of a Kit that also includes guidance for hospital visits and a wallet card for people with PWS to use. Order the Kit here.
Policy on Growth Hormone Treatment in the Prader-Willi Syndrome Population – PWS Association of Australia 2005.
Current Statement on Growth Hormone Use In Australia – 2016
Prader-Willi Syndrome and the NDIS (2015) – A research report to guide the allocation of funds and services. In collaboration with Melbourne University, Australia, the Collier Charitable Fund and the PWS Better Living Foundation.
Videos
Learning with Prader-Willi Syndrome – This Australian video explains some of the characteristic behaviours relevant to a classroom situation. Useful management techniques are described to help children and young people gain skills for social interactions and greater independence.
First steps to understanding and managing Prader-Willi Syndrome – An outline of the causes and characteristics, plus health and wellbeing issues associated with PWS. Designed for those who support people who have PWS.
PWS – The Medical Perspective – Advice for doctors who are caring for a patient with Prader-Willi Syndrome.
PWS – Beyond a Diet – Relationship of a dietitian to other supporters of a person with Prader-Willi Syndrome.
3rd Asia-Pacific Prader-Willi Syndrome Conference – List of speakers and topics, with links to session videos. Hosted in Melbourne in 2015.
Youtube Channel for PWSA Victoria has conference presentations and other videos
Newborn Diagnosis Video – Released in 2017 this video has been produced for medical and allied health professionals to raise awareness of PWS, outlining common traits to look for when considering a diagnosis. Early diagnosis is critical, enabling therapeutic and medical plans to be put in place.
This compelling documentary about PWS insatiable hunger in young people, gives graphic insight into the support needs of someone with the syndrome. Made in New Zealand.
Newsletter
PWSA newsletters: Go to the current and archived editions, where available.
Training brochures
These short overview brochures can be used as early education for friends, family, neighbours and others.
Research
Research is conducted throughout the world. Go to the research page.
Submissions
- Joint Standing Committee on the National Disability Insurance Scheme Market Readiness for the National Disability Insurance Scheme: PWSA Submission – February 2018
- Department of Premier and Cabinet (Vic) – A registration and accreditation scheme for the disability workforce: PWSA Submission Oct 2017
- Senate Standing Committee on Community Affairs National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017: PWSA feedback July 2017
- Joint Standing Committee on the National Disability Insurance Scheme – Transitional arrangements for the National Disability Insurance Scheme: PWSA Submission July 2017
- Department of Premier and Cabinet (Vic) – Rights in Specialist Disability Accommodation Consultation Paper: PWSA Submission – June 2017
- The Treasury, ACT – Tax Deductible Gift Recipient Reform Opportunities Consultation – June 2017
- Productivity Commission – National Disability Insurance Scheme (NDIS) Costs: PWSA submission about Issues Paper – March 2017
- Joint Standing Committee on the National Disability Insurance Scheme: PWSA submission to Inquiry into Accommodation for People with a Disability and the NDIS – March 2016
- National Disability Insurance Agency: PWSAA Submission to Supported Disability Accommodation – Pricing and Payments Framework Consultation, 14 May 2016
- Productivity Commission – National Disability Insurance Scheme (NDIS) Costs Position Paper: PWSA Submission – July 2017
- Department of Social Services – National Disability Insurance Scheme Code of Conduct Discussion Paper: PWSA Submission – June 2017
- Department of Social Services – Disability Employment Services Reform: PWSA Submission – Nov 2016
- Productivity Commission – Introducing Competition and Informed User Choice into Human Services: Identifying Sectors for Reform Preliminary Findings Report – PWSA Submission Sept 2016