Imagine having a brain that doesn't function as it should, a body that defies the laws of human nature and a hunger that can never be satisfied...
Prader-Willi Syndrome (PWS) is a rare, complex, unique, multistage genetic disorder which affects 1 in 15,000 births. Prader-Willi Syndrome affects the part of their brain called the hypothalamus, which is responsible for the regulation of all the systems in the body and the resultant control of hunger, thirst, temperature regulation, pain and stimulation hormone production amongst others.
Since 1979, the Prader-Willi Syndrome Association of Victoria (PWSA Victoria) has been providing vital on the ground support to families, professionals and community organisations in the southern states of Australia.
Today, we know more about Prader-Willi Syndrome (PWS) than ever before. The purpose of the PWSA Victoria is to provide vital services to those living and supporting people, with PWS in the areas of education, support, advocacy and awareness.
It is our role to work closely with organisations around the world, whose vision and purpose align with ours, to ensure the entire PWS community is well supported, while researchers around the world work hard to find a cure and viable treatments.
It is our vision to ensure that every member living with PWS receives optimal care and assistance from the beginning of life. We provide up to date and relevant information to help guide families through all stages of the PWS journey and help navigate the medical and education system and the National Disability Insurance Scheme (NDIS).
We also assist the wider PWS community – educators, professional service providers, medical and allied health professionals, disability advocacy groups, employers, the research community and the broader community in understanding PWS and provide information on how best to care for someone with PWS.
We aim to continue to break down barriers and create a world where everyone with PWS has access to the right tools, to enable them to live a full and inclusive life.
Our VISION : A world where people with Prader-Willi Syndrome lead a full and inclusive life
Our MISSION : Empowering those living with PWS through support, education, advocacy and awareness.
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