Statewide Care Plan

Do you think people with Prader-Willi Syndrome deserve better? Better care? Better support? Better understanding? Better healthcare? Better futures?

If you answered ‘YES’ to any of the above, click on the link below because we are calling on you to help co-design the statewide care plan by sharing your experiences in the healthcare and support systems that you have used in the past and currently use today.

Your experiences (good and bad) will help us design a system that works for our families and their loved ones.

No matter where you are on your journey or where you live, your shared experience can help as building a Prader-Willi Syndrome State-wide care plan is only possible if stakeholders such as Monash University, Monash Children’s Hospital, The Royal Children’s Hospital, Melbourne, Monash Health and Monash Partners Academic Health Science Centre understand what it is that is needed and how past experiences have assisted or have caused grief.

To join the discussion please click on the button below and you will be directed straight to the discussion boards where you can join in and share your experience.

Take me to the discussion

For those that feel that a virtual zoom meeting would be a better option to share your experiences and suggestions, this opportunity will be on the following dates and times:

  • Thursday 2nd December at 10am
  • Thursday 2nd December at 8pm

If you are interested in joining either of these zoom meetings, please send an email to

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Article By Renee Zilm

Renee excels in enhancing business operations by refining processes, ensuring organisations function with greater efficiency, effectiveness, and strategic insight. Beyond her professional expertise, Renee is a mother to four children. Her life took a poignant turn when her second youngest child was diagnosed with Prader-Willi Syndrome shortly after birth. Embracing this challenge with grace, Renee now dedicates her time to caring for her son while also committing herself wholeheartedly to her role as President of the Prader-Willi Syndrome Association of Victoria.

Ever since her son Harvey’s diagnosis, Renee has been a force of change, initiating and steering innovative programs and services designed to empower individuals with Prader-Willi Syndrome. Renee is deeply invested in the tenets of social justice and inclusion, driven by the conviction that individuals with disabilities deserve equitable access to support and resources necessary for a full and inclusive life. Her profound dedication to her work and her family reflects an overarching mission to ensure that every individual with disabilities can thrive in a supportive and inclusive society.