The Prader-Willi Syndrome Association was set up by parents of children affected by the syndrome. It is run by volunteers. It has a long experience of providing help and information. Anyone with an interest in the condition is welcome to join. Our members include parents and carers, family members, people with PWS, professionals and interested supporters.
Joining the Association gives you the opportunity to make contact with other parents and exchange information. And of course, we are always thrilled to get your ideas. Any member is welcome to apply to join the committee. No experience is necessary. No matter your skills background, your willingness to help people with PWS have a better life will always be appreciated.
People who become a member of a State association are automatically a member of the Australian Association. (The Associations are undergoing change at present as Australia transitions to a consistent diability service arrangement under the NDIS.) In the meantime, choose an Association that is nearest to you. Different States offer different services, depending on the availability of the volunteers.
State Associations offer:
National Disability Insurance Scheme (NDIS) information
The Association is in contact with the NDIS. The Association keeps it members informed about what the NDIS means for people with PWS. The NDIS is not everywhere yet. The Association recommends you get in contact and learn more about ‘what to do next’.
In Service Training
Access to a professional, organisational staff trainer (in-service training) who visits creches, kindergartens, schools, work places, adult day centres and residential accomodation settings. To enquire, go to the ‘Contact us’ page to check availability.
Parent and Carer Support
Assistance and advice to parents or carers of a person with PWS. Talk to parents who have been through the experience already. Tell them your needs and issues. They are happy to share with you what they learned , whatever the age of the person with PWS. Please go to the ‘Contact us’ page.
Some States hold social events such as a picnic or Christmas Party. Meet other families in an informal setting. It’s a great opportunity to get hints about so many aspects of PWS management. It is also valuable for your person with PWS to meet others in the same situation, which can help reduce any sad feelings about having PWS.
Conferences and Information Sessions
General Meetings are held during the year. Guest speakers are invited to talk with our families. An Annual Family Information Day and Annual General Meeting is held, to keep families updated with the latest information relevant in that area. An Asia Pacific Conference and International PWS Conference is held periodically.
Members of the Victorian and NSW Associations receive a periodic newsletter with up to date information, as well as notification of upcoming events.
The Australian Association is affiliated with the International Prader-Willi Syndrome Organisation (IPWSO).
IPWSO is a strong supporter of each international conference. The next PWS conference is in Cuba in 2019!