Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental, 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 causing a wide range of symptoms including impacts on cognition, emotional regulation, growth, muscle development, metabolism and appetite – most people with PWS are always hungry. Each individual is affected to varying degrees by each symptom. Learn more ›
October 31, 2020
We invited our adult members with PWS to a Leadership and Social Weekend which was held Oct 16th – 18th 2020, at The Surrey Hotel in Auckland. The programme was aimed at developing advocacy and leadership skills and enabled us…
Read more ›March 30, 2020
Just a couple of weeks before our world changed momentously with the impact of Covid-19, we were able to enjoy a sunny weekend together on the alluring shores of Lake Taupo. It was the perfect site for our family camp,…
Read more ›December 23, 2019
Whilst attending the IPWSO conference in Cuba, Julia and Dane Fuller, from New Zealand, were very fortunate to be able to interview expert endocrinologist, Dr Jennifer Miller. The interview contains useful information for families as Dr Miller discusses growth hormone…
Read more ›This will be IPWSO’s 11th international Prader-Willi syndrome conference. These are held every 3 years, each time in a different country. The conference usually has 4 different programmes available: Clinical and Scientific, Parents & Family, Professional Caregivers and Providers, plus…
Read more ›These meetings will generally take place on the last SUNDAY of each month at 7.30pm. Each month is for parents with children of a different age range, so there will be a meeting for each parent group every 3 months.…
Read more ›Our Zoom Chats are monthly facilitated social groups. They will mainly involve general chat about what everyone has been up to, but may also involve some games or discussion on a topic (we would let you know the topic beforehand…
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