Allied Health Professionals

People with Prader-Willi Syndrome are affected from birth throughout all stages of their life.  The challenges they experience change throughout the different stages; however, each stage consistently presents with real, significant and potentially life-threatening issues.  A multi-disciplinary, holistic, coordinated and proactive care team is essential across the lifespan of someone with Prader-Willi Syndrome to ensure quality of life can be achieved.

A holistic and multidisciplinary approach starting from the neonatal period is recommended to ensure optimal management to improve the quality of life of Prader-Willi Syndrome patients throughout their lifetime. For a successful transition from childhood to adulthood, a multidisciplinary team needs to share clinical information, and should keep the same policy about food, environmental, and psychiatric interventions.

Research has shown that Holistic care and integrated services have been proven to deliver better outcomes for people with Prader-Willi Syndrome.

A group of clinicians have established a series of guidelines for the treatment of people with Prader-Willi syndrome. The guidelines are being implemented in hospitals around the USA and it is our hope that these guidelines will be adopted here in Australia.

 The guidelines have been described in the study “A multidisciplinary approach to the clinical management of Prader-Willi syndrome,” published in the journal Molecular Genetics & Genomic Medicine. and a copy of the study can be found here.

Currently there is no medication available to cure Prader-Willi Syndrome, but there are viable treatments and interventions to assist with many of the symptoms/characteristics of Prader-Willi Syndrome.

Further information with regards to Medical Care can be found here – link to Medical Care, Prescribed medications page

We recommend that anyone who cares for someone with Prader-Willi Syndrome read through as much information within this website as possible, to ensure a thorough understanding of the requirements for safety and adequate support.

The Prader-Willi Syndrome Association of Victoria Inc. (PWSA Victoria) is a volunteer led ACNC registered Australian Charity committed to working with service providers who care for people with Prader-Willi Syndrome. We can work with you and any support persons required to ensure that persons with Prader-Willi Syndrome who are in our care, are receiving the best support to enable them to continue to enjoy accessing the community whilst keeping them safe. For a consultation, please contact the Prader-Willi Syndrome Association of Victoria on 0451 797 284 or email us on info@pws.asn.au

Intervention Therapies

Find out more about Intervention therapies that may be suitable for the person you’re supporting.

Find out more