2024 PWS Awareness Collection

We are excited to introduce the 2024 PWS Awareness Collection!

This year, we’re embracing a powerful message that resonates deeply for every single person living with Prader-Willi Syndrome. 


In essence, we believe this statement/motto speaks to the core of the human experience within the PWS community—a collective journey marked by hope, resilience, and the universal desire to live life to its fullest, or to live a life without the challenges of hyperphagia, regardless of the challenges faced.

It underscores a shared commitment to support, love, and strive for a future where everyone affected by PWS can achieve their dreams and aspirations.

The Sunflower

Our 2024 collection proudly features the sunflower – a universal symbol for invisible disability.

The term “invisible disability” refers to disabilities that are not immediately apparent to others, such as chronic pain, mental health issues, cognitive dysfunctions, and in the case of PWS, the behavioral, emotional, and cognitive challenges that individuals face. These aspects of the syndrome can profoundly impact an individual’s ability to perform daily activities, work, and interact socially, even though they may not be as visible as physical disabilities.

By choosing the sunflower, we acknowledge the unseen struggles and celebrate the incredible resilience of the PWS community. 

Shop to Support, Wear to Advocate!

Your support means the world to us and to every individual and family living with PWS.  

We’re inviting our members to make an early purchase this year! By securing your items from the 2024 PWS Awareness Collection now, you will have these items ready to go come May, because with every item you purchase, you’re not just wearing a piece of clothing or accessory; you’re carrying a beacon of hope and a banner of advocacy for those living with Prader-Willi Syndrome

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2024 PWS Awareness Collection

We are excited to launch this year’s Awareness collection ahead of PWS Awareness month in May. This year, we’re embracing a powerful message that resonates deeply for every single…

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Chocolate-Free Activity ideas for Easter

Easter is a time for celebration, joy, and family gatherings. However, for those in the Prader-Willi Syndrome (PWS) community, traditional Easter egg hunts featuring chocolate treats can pose challenges….

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United in Hope: 12th International PWS Conference

This conference, themed “United in Hope,” signifies an unprecedented collaboration and is expected to become the most significant international gathering focused on PWS to date.

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Prader-Willi Syndrome (PWS) is a rare, complex, unique, life-threatening multistage genetic disorder which affects 1 in 15,000 births and results in an abnormality of chromosome 15. PWS can have a significant impact on behaviour, learning, mental and physical health, community inclusion and social relationships. People with PWS exhibit high anxiety, complex and challenging behaviours and cognitive dysfunction throughout their lives. PWS is a spectrum disability, and the degrees of visual abnormality varies immensely. Many people with PWS also have psychiatric problems and autistic characteristics. A defining characteristic of PWS is hyperphagia, or a compulsion to eat.  For more information visit www.pwsavic.org.au

Prader-Willi Syndrome Association of Victoria (PWSA Victoria) is a volunteer lead ACNC registered Australian Charity, with many volunteers having lived experience. Their role is to work closely with organisations around the world, whose vision and purpose align with their own, to ensure their local PWS community is well supported, while researchers around the world work hard to find a cure and viable treatments. The PWSA Victoria’s aim is 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. For more information, please visit www.pwsavic.org.au

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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.