Welcome to the Prader-Willi Syndrome Association of New Zealand
Freephone PWS Helpline: 0800 4PWS HELP | 0800 4797 4357

What is Prader-Willi Syndrome?

Prader-Willi Syndrome (PWS) is a rare and complex genetic disorder which occurs in around 1 in 16,000 births and affects approximately 200 New Zealanders.

PWS alters functioning of the hypothalamus in the brain and impacts cognition, emotional regulation, muscle development, growth, metabolism, and appetite – most people with PWS are always hungry. Each individual is affected to varying degrees by each symptom. Learn more ›


Pitolisant data published and film of patient experiences launched

May 5, 2019

MAY 2019 – The case series data from 3 children trialling pitolisant has been published. It was noted that the treatment was well tolerated and in addition to the previously reported positive effects on cognition (mental clarity and processing speed), pitolisant…

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Self-funding GH treatment for adults now costs much less…

March 21, 2019

There is evidence that for people with PWS it is beneficial to continue treatment with growth hormone therapy even after they have reached their final height. To learn more about growth hormone treatment for teens and adults with PWS, visit our GH…

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Young Families Weekend 2019

- Fri 1st Nov - Sun 3rd Nov

This weekend is being held in Christchurch at the Top 10 Holiday Park. Families who have a young child with PWS will have been invited. Please get in touch if you are not already a member and would be keen…

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10th International PWS Organisation Conference 2019 – Cuba

- 13th - 17th Nov 2019

This is IPWSO’s 10th international Prader-Willi syndrome conference. These are held every 3 years, each time in a different country. The conference has 4 different programmes available: Clinical and Scientific, Parents & Family, Professional Caregivers and Providers, plus there will…

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