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 ›
June 14, 2019
Following the success of our previous Tweens and Teens Weekend in 2017, we recently held another weekend, this time in Wellington. Our weekend programme was full of activities which included lots of sight-seeing around our capital city and we were…
Read more ›May 5, 2019
MAY 2019 – The case series data from 3 children trialling pitolisant has been published. It was noted that the treatment was well tolerated and in addition to the previously reported positive effects on cognition (mental clarity and processing speed), pitolisant…
Read more ›Transition Expo – Auckland This Transition Expo features most Auckland Transition and Vocational Programme Providers as well as an array of leisure, recreation, sports and information providers. Transition providers are contracted by the Ministry of Social Development to facilitate a smooth progression from school to…
Read more ›Young Families Weekend This weekend is being held in Christchurch at the Top 10 Holiday Park. Families who have a young child with PWS will have been invited. Please get in touch if you are not already a member and…
Read more ›This is IPWSO’s 10th international Prader-Willi syndrome conference. These are held every 3 years, each time in a different country. The conference has 4 different programmes available: Clinical and Scientific, Parents & Family, Professional Caregivers and Providers, plus there will…
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