Final call for Caregivers to have their say

We have received some great information regarding what an ideal model of healthcare might look like for people with Prader-Willi Syndrome and their families both from the Loomio discussion board and from last weeks zoom discussion.

Due to an overwhelming response to our previous Zoom discussion last week, there will be another session for those that missed out or those that wanted to come back and further contribute to the discussion.

This is an important opportunity for caregivers to have their say on the 15th of December at 8:00pm as this will be our final session for families to contribute to this stage of the project. This session will run for approximately one hour.

People with PWS deserve better and this project will allow us to improve healthcare and support for people with Prader-Willi Syndrome and their families. So no matter where you are on your journey, your feedback is important and invaluable.

This is an open invitation to have your say about a state-wide model of care and what that may look like.

Please register your interest by clicking on the button below

Register

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Article By Renee Di Genova

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.