About Prader-Willi Syndrome Association (NZ) Inc

Prader-Willi Syndrome Association (NZ) Inc

Postal Address: P O Box 143, Masterton

Freephone (NZ only): 0800 4 PWS HELP (0800 4 79743)

Telephone: +64.6.372.7674 Fax: +64.6.372.7696

Patron: Governor General Anand Satyanand PCNZM

The Prader-Willi Syndrome Association (NZ) Inc, was established in 1989 by a small group of parents concerned that there was no support for their children, and very little information available on the syndrome. Originally under the auspices of the IHC, the Association became a registered incorporated society in 1991 with a governing board.

The Association is a parent support network formed to improve the quality of life for all persons with PWS in New Zealand and their families. It also aims to collaborate and affiliate itself with other organisations with similar objectives both in this country and overseas and to encourage research and exchange of ideas, projects, and experiences in regard to the best practice and management of this syndrome.

The Association is a member of the International PWS Organisation www.ipwso.org

Resources & Services

Advocacy

The Association offers an advocacy service to help support you through your child's transition stages - kindergarten, school, secondary schools, special needs, transition into the workforce etc

Resources

We have a wide range of resources including pamphlets, videos, tapes, booklets, texts, newsletters, and audio tapes. Many of these are from the most recent Australasian conferences.

Parent Contacts

We have parent contacts in all areas and can put you in touch with a family with a similar aged child as your own.

Meetings

Each year we have a variety of meetings, either visiting speakers, workshops, or parent gatherings. Notification of these is via our newsletter to members.

Our quarterly newsletter, "PWS Downunder" is collaborative with our Australian neighbours, printed by Pfizer in Australia and sent to all members of the Association. It includes up-to-date information from around the world.

Annual Report

The 2009 Annual Report is available online.

Subscription

Annual subscription is $NZ25.00, payable to the Prader-Willi Syndrome Association (NZ) Inc, P O Box 143, Masterton, each January.