Welcome to the Prader-Willi Syndrome Association of New Zealand
Freephone PWS Helpline: 0800 4PWS HELP | 0800 4797 4357

What is Prader-Willi Syndrome?

Prader-Willi Syndrome (PWS) is a rare and complex neurodevelopmental 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 which include 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 ›

NEWS

High prevalence of scoliosis in large cohort of patients

April 29, 2022

MARCH 2022 – The prevalence rate of scoliosis in PWS has not been well established with figures ranging between 40% to 80% of patients in various studies and surveys. It is known that scoliosis typically increases with age, with occurrence…

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PWSA(NZ) stands with Rare Disorders NZ in demanding Fair for Rare

February 28, 2022

On International Rare Disease Day, PWSA(NZ) stands with Rare Disorders NZ calling for action from Government to commit to a National Health Strategy for Rare Disorders. Today, Rare Disorders NZ released their Voice of Rare Disorders survey 2021, the largest-ever…

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A new trial is required for carbetocin / LV-101

February 2, 2022

JAN 2022 –  A New Drug Application for LV-101 (intranasal carbetocin) was granted FDA Priority Review last year for the treatment of hyperphagia and behavioural symptoms in PWS, but ultimately, the review was unsuccessful as there were concerns about efficacy.…

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EVENTS

Young Families Weekend 2021

- POSTPONED TO Sept 17th-18th 2022

POSTPONED TO Sept 17th and 18th 2022 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…

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Virtual Social Evenings for Parents

- last Sunday of the month

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.…

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Zoom Chat – Social Groups for New Zealanders with PWS

- 2nd Saturday / 1st Tuesday

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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