Finding the gaps in Australian Government funding support for SWAN children

Project Details

In Australia approximately 2500 children each year are born with a Syndrome Without a Name (SWAN) - a genetic condition so rare that it is often impossible to diagnose. 40 to 60 per cent may never be diagnosed.

Genetic conditions can result in complex medical conditions, cognitive and physical impairment, often requiring significant support. But how does an unknown condition or lack of diagnosis impact access to support? We are working with SWAN Australia to find out.

SWAN Australia provides support and advocacy for families of children with an undiagnosed or rare genetic condition. SWAN members have been reporting challenges in accessing government funding supports such as Centrelink payments and the National Disability Insurance Scheme.

We will survey parents or caregivers of SWAN children to learn about their experience in accessing and maintaining sufficient government funding support, and how this impacts on access to supports that enable health, inclusion and participation for these children and their families.

This information will be used by SWAN in their ongoing work and advocacy.


Fleur Smith

Dr Manjula Marella

Max Thanh Le


Heather Renton, Syndromes Without a Name (SWAN) Australia


This project is being funded by the Melbourne Disability Institute at the University of Melbourne.

Research Group

Disability, Inclusion and Rehabilitation Designing disability-inclusive virtual healthcare

School Research Themes

Disparities, disadvantage and effective health care

Key Contact

For further information about this research, please contact the research group leader.

Department / Centre

Nossal Institute for Global Health

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