Down Syndrome Australia

About the organisation 

Down Syndrome Australia is the national peak body for people with Down syndrome, their families and supporters. As a not-for-profit organisation, their purpose is to drive societal change and provide a strong national voice, so that people with Down syndrome are fully included and treated fairly. The voices and rights of people with Down syndrome shape everything they do. To reflect this, people with Down syndrome are employed in meaningful roles across projects, such as health and employment, and provide organisational leadership through representation on the Board. Working in partnership with state and territory associations, and other disability representative organisations, Down Syndrome Australia provides information, resources and advocacy to help improve lives across the country. 

Ageing Well with Down syndrome 

The project 

With support from nib foundation, Down Syndrome Australia will develop a new series of easy-to-use health guides to support people with Down syndrome as they age. Each guide will focus on one topic, like mental health, dementia, menopause and preventative healthcare, and will help people recognise early signs of age-related conditions, get support early and stay well.  

The project will be guided by an ageing advisory group and shaped by the voices of people with Down syndrome, their families, and supporters. The resources will be freely available on Down Syndrome Australia’s national resource hub and shared widely through community networks, members and partner organisations across the country. 

Why it matters 

People with Down syndrome are living longer than ever before, from just 8 years in 1950 to around 60 years today. But they still face much poorer health outcomes than the general population. Conditions like dementia, osteoporosis and diabetes are more common – and often missed or misunderstood. This can lead to avoidable hospital visits, poorer care and deaths that could have been prevented.  

This project will help change that. By creating clear, tailored health resources, it will raise awareness and give people with Down syndrome and their families the tools to speak up and get the right care at the right time.