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 ›
December 23, 2021
The build up to Christmas, the increased number of social events, and the holiday celebrations themselves can all cause additional anxiety for individuals with PWS and their families. Some tips to reduce stress on Christmas Day are: Plan ahead –…
Read more ›November 29, 2021
Together with the PWS Associations of Australia, Malaysia and Thailand, we held our first virtual conference in October 2021, which was also the first Asia Pacific conference to be co-organised by 4 countries. From attendee feedback received, it seems that…
Read 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 ›We are very excited to announce our next Family Camp is being held 11th – 13th March, 2022, at MiCamp Taupo. Our Family Camps are open to people with PWS of all ages to attend with their family or a…
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 parrallel programmes available: Clinical and Scientific, Parents & Family, Professional Caregivers and Providers,…
Read more ›POSTPONED TO 2022 – Sept 17th and 18th 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…
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