About Us

The New Zealand PWS Association

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 first and foremost a parent support network formed to improve the quality of life for all persons with PWS in New Zealand and their families. The Association aims to increase awareness and understanding of PWS and offers information and support to all families affected by PWS and those who work with people who have PWS. Our services include education / training, advocacy and providing resources. We also aim to collaborate 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 the syndrome. We are a member of the International PWS Organisation www.ipwso.org.

Our 2015 Annual Report is available to read online. Click here to read.

Our Patron: His Excellency Lieutenant General The Right Honourable Sir Jerry Mateparae, GNZM, QSO, Governor-General of New Zealand

Who are we?

Board of Trustees, Chairperson: Karen O'Reilly
Board Members: Grant Rogers, Deborah Harnett, Alwyn Jones, Helen Sankey, Kahu Simmonds, Derek Reid (Treasurer)
CEO: Sarah McLarin: ceo@pws.org.nz
Administration Manager: Jo Davies: jo.davies@pws.org.nz
Family Support and Training: Cindy Adams-Vining: cindy@pws.org.nz

What does the PWS Association do?

The Association advocates on behalf of people with PWS and for many years has been trying to secure funded Growth Hormone Therapy for children with PWS on a par with other countries. The Association offers support at all stages of PWS, from diagnosis to school years to residential care, and has parent contacts in most areas who are happy to meet new families. We have a range of information resources available for parents, carers and educators, including books, leaflets, DVD's and articles. If you can't find what you are looking for or want information on a specific subject, please ask. We organise annual events which provide opportunity for people with PWS and their families to meet others who experience this rare syndrome and form mutual support networks. We also offer training courses for schools and residential care providers. We keep in touch with our members through our e-newsletters, website, Facebook page and our magazine 'PWS Downunder'. Occasionally, we are able to offer workshops with expert speakers and every four years, we are involved in organising or hosting the Asia-Pacific PWS Conference.