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, 2019
Whilst attending the IPWSO conference in Cuba, New Zealanders, Julia and Dane Fuller, 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 therapy,…
Read more ›November 17, 2019
We have recently held Young Families Weekends approximately every 2 years. Our latest weekend for families of newly diagnosed or young children was held at the Top 10 Holiday Park in Christchurch. Both adults and children enjoyed meeting new people…
Read more ›August 31, 2019
AUG 2019 – Can a GABA-modulating drug normalise the balance of neurotransmitters in the brain and improve behaviour in PWS? GABA (gamma aminobutyric acid) is an amino acid acting as a brain neurotransmitter (chemical messenger.) GABA inhibits certain brain signals…
Read more ›PWSA Family Camp 2020 – Registration closes JAN 31ST (or when camp is full.) People with PWS of all ages are welcome to attend with their family or a support worker. Book now by completing a registration form and sending…
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…
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