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 ›

NEWS

The characteristics of temper outbursts in Prader-Willi syndrome

December 23, 2018

NOV 2018 – In this study, Drs. Rice, Einfeld and Woodcock aimed to develop a comprehensive understanding of temper outbursts in PWS. A survey was developed from interviews conducted with individuals with PWS and their caregivers. The survey was completed by…

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Rapid increase in visceral fat (deep abdominal fat located around internal organs) and LDL cholesterol after the cessation of GH therapy

November 9, 2018

SEPT 2018 – A Japanese research team, Koizumi et al, used dual-energy X-ray absorptiometry (DEXA scans) and abdominal computed tomography (CT scans) to compare the fat distribution between before ceasing GH treatment and 6 months and 12 months after the…

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EVENTS

PWS Training – Palmerston North

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Training for Residential Care Support Staff. Venue: IDEA Services Palmerston North offices. Time: Approx 10am – 3pm. Cost: $60+gst per person. Places are limited, please enquire. Registration is essential. To enquire and register, either email: Cindy@pws.org.nz or submit an enquiry via…

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Tweens and Teens Weekend 2019

- Fri 17th - Sun 19th May

This weekend is being held in Wellington at the Bay Plaza Hotel. Tweens and teens with PWS are able to attend with one parent / carer. This event focuses on supporting teenagers with PWS and their families. It will involve plenty…

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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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