The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) provides vital supports and services to people living with Prader-Willi Syndrome (PWS) including anyone who:
- cares for a person with Prader-Willi Syndrome;
- provides physical and emotional support to a person with Prader-Willi Syndrome;
- offers professional services to a person with Prader-Willi Syndrome; and
- that has interaction with a person who has Prader-Willi Syndrome
The Prader-Willi Syndrome Association of Victoria (PWSA Victoria) empower those living with Prader-Willi Syndrome through support, education, advocacy and awareness.
We do this by providing vital and necessary on the ground supports and services to the Prader-Willi Syndrome (PWS) community.
Below is a brief overview of the services offered:
- advocating on behalf of the PWS Community to local and federal governments, and professional service providers for change in many vital areas that affect those living with Prader-Willi Syndrome;
- advocating for individuals when dealing with service providers and in a crisis situation;
- assist families in navigating the NDIS;
- provide guidance to families to help them navigate the medical, education, employment and residential support systems;
- provide in-service training to families, carers, professionals, and organisations such as childcare, schools, workplaces, residential group homes;
- providing opportunities for peer support by bringing our community together through family camps and social events
- Host specialised PWS workshops, conferences and lectures presented by local and International PWS experts; and
- share up to date relevant information via quarterly newsletter, social media and email.
It is imperative that we provide these vital services and supports (including the behind the scenes advocacy on behalf of our members ) to families from very early on in their journey, to ensure that each child living with PWS is given every opportunity possible to receive optimal care and assistance throughout their life. This means that we personally reach out to each of our newly registered ‘PWS family’ members and meet with them (in the hospital or at their home) to provide them with information about the support that is available to them and let them know that they are certainly not alone in their journey.