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

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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Phase 2 carbetocin results are published, confirming positive results for hyperphagia and behaviour

July 2, 2018

JUNE 2018 – Results of the phase 2 carbetocin trial (oxytocin-like nasal spray) have been published and phase 3 is expected to begin later this year. Carbetocin is similar to oxytocin, but specifically targets only the oxytocin receptor which may…

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EVENTS

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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