We are a parent support network which aims to enhance the lives of those with Prader-Willi syndrome in New Zealand by providing advocacy, education and support services to all families affected by PWS and to those who work with people who have PWS. We also hope to increase public awareness and understanding of PWS.
We advocate on behalf of people with PWS by campaigning on issues, such as access to medicines, and by helping to increase PWS awareness which leads to greater acceptance and understanding. We can also provide individual advocacy services as required, i.e. attending meetings or writing letters of support. Please contact us for help.
We provide information and resources to families, carers, schools, service providers and other professionals. Here are some of the ways we provide this service:
- We are able to offer training sessions to schools and residential care providers. Please check our Training Courses page for any upcoming courses or to complete a training request form.
- We have a range of resources available on our Publications and Resources page. If you cannot find what you are looking for, please ask and we will be happy to help.
- Resources may also be borrowed from our PWSA Library.
- From time to time we host seminars with specialist presentations by expert speakers. We also co-organise the Asia-Pacific PWS Conference held every 3 years. Please check our Training Courses and Conferences pages.
We maintain a parent support network and offer support to people with PWS and their whanau. Here are some of the ways we provide this service:
- We can be contacted anytime via our website or freephone helpline for new diagnosis or crisis support.
- We can put families in touch with other families in their area or with families who have a child with PWS of a similar age. Just check the box to indicate you would like us to do this on our membership form.
- We host family support events and aim to hold biennial family camps, biennial young families weekends and youth weekends, plus regular regional family days. Please check our Upcoming Events page.
- We keep in touch via email, Facebook, and facilitate families keeping in touch via our online support group.