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 ›
July 9, 2021
At the end of May, we enjoyed a weekend in Wellington attended by 12 of our tweens and teens with an accompanying parent. Many of these teens know each other quite well now as ‘regulars’ at these events, but it’s…
Read 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 ›CLICK HERE FOR CONFERENCE DETAILS > CLICK HERE TO REGISTER >
Read more ›Our Young Families Weekends are child-friendly, social get-togethers for parents of infants and young children with PWS – an opportunity to meet others, ask questions, share stories, information and advice. We also aim to provide relevant information and promote discussion on topics of interest to families. We…
Read more ›We are very excited to announce the date of our next family camp! This will be held 11th – 13th March, 2022 at MiCamp Taupo. Our family camps are open to people with PWS of all ages to attend with…
Read more ›
