Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental disorder which occurs in around 1 in 16,000 births and may affect approximately 200 New Zealanders.
PWS alters functioning of the hypothalamus in the brain causing a wide range of symptoms which include impacts on: cognition, emotional regulation, growth, muscle development, metabolism and appetite – people with PWS often expereience a constant hunger. Each individual is affected to varying degrees by each symptom. Learn more ›
March 31, 2025
In March this year, we returned to MiCamp Taupō where we were treated to lakeside sunshine once again. This was our largest camp to date with 94 people registering to attend. This year our 4 activity groups formed ‘teams’ and…
Read more ›October 31, 2024
We held our first transition event during October, with one day focused on support agencies and providers, and the other day focused on families. We hope the event was beneficial to those who attended, but I think it was also…
Read more ›September 30, 2024
APPWS2024 was jointly hosted by PWS Australia and PWRFA (Prader-Willi Research Foundation Australia), August 30th – 31st, 2024. A number of delegates attended from New Zealand, who were mostly speaking, or members of the organising committee. There was also a…
Read more ›IPWSO is partnering with Prader-Willi Syndrome Association USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) to host United in Hope – an International PWS Conference to be held June 24-28, 2025 in Phoenix, Arizona.The conference theme, “United…
Read more ›
