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 ›
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…
Read more ›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…
Read more ›For people with PWS and their families or support workers. Enjoy an afternoon of swimming, playing and relaxing from 2pm / 2.30pm. A little afternoon tea will be provided, followed by a BBQ at 4.30pm. If the weather doesn’t play…
Read more ›Show Your Ability is a free disability equipment expo roadshow. It will be making its way around NZ, starting Feb 26th in Auckland. FEBRUARY 26TH – AUCKLAND – ASB SHOWGROUNDS, FEBRUARY 27TH – HAMILTON – CLAUDELANDS EVENTS CENTRE, MARCH 1ST…
Read more ›February 28th is international Rare Disease Day, an opportunity to raise awareness and educate people about the thousands of rare conditions that affect more than 377,000 New Zealanders. WHAT CAN YOU DO? Share for Rare Host a morning or afternoon tea,…
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