Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.1,2 Individuals who experience rare disease disability will often require life-long support and ongoing assistance, including for daily activities.3
There is significant unmet need for mainstream, community, and foundational supports among Australians living with rare disease disability. Timely access to person-centred disability support for Australians living with a rare disease is vital to sustaining quality of life and, where possible, reducing or preventing functional decline.
As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) advocates for Australians living with rare disease disability by engaging in key disability reform initiatives.
To address the challenge of responding to more than 7,000 different rare diseases, RVA has created the following 5 broad rare disease disability categories:
- Neurological / neurodevelopmental – conditions that affect the brain, nerves, or how the brain develops.
- Progressive / degenerative – conditions that get worse and more serious over time.
- Episodic / fluctuating – the impacts come and go and can change from day to day.
- Children with delayed development – children who take longer to learn and do things.
- Undiagnosed rare disease conditions – there is currently no name or explanation for the condition.
About Rare Voices Australia
RVA works with key stakeholders in the rare disease sector to drive the best outcomes for Australians living with a rare disease. Key stakeholders include people living with a rare disease, governments, advocates, researchers, clinicians, and industry.
RVA’s work is non-disease specific and based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems, including health, disability and other systems.
Rare Disease Disability Submissions and Representation
As the national peak body, RVA lodges Submissions in response to the policies, processes and systems that impact Australians living with rare disease disability. We are also a member of the Neurodegenerative Palliative Care and Rare Conditions Advisory Group (NPRAG) to the National Disability Insurance Scheme.
The National Strategic Action Plan for Rare Diseases
The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) is the first nationally coordinated effort to address rare disease in Australia.
RVA led the collaborative development of the Action Plan in 2018 and 2019 through an extensive nationwide multistakeholder consultation process. The Action Plan was launched in 2020 by the Federal Minister for Health with bipartisan support.
Action Plan Implementation
A key strength of the Action Plan is the shared responsibility across the rare disease sector for its implementation and stewardship. RVA has been leading the collaborative implementation of the Action Plan since 2020.
Implementation progress within the Action Plan’s Care and Support Pillar informed the identification of Australians living with rare disease disability as a priority population.
Alongside stakeholders, RVA is advocating for the Action Plan’s full implementation to address gaps and inequities in rare disease awareness and education, care and support, and research and data. RVA continues to call for all disability reforms to be co-designed in partnership with people who have rare disease expertise.
Individual Rare Disease Disability Advocacy Resources
References
- Australian Government. Australian Public Service Commission. Definition of disability. September 2019. Accessed 1 May 2026. https://www.apsc.gov.au/working-aps/diversity-and-inclusion/disability/definition-disability
- Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings. July 2024. Accessed 1 May 2026. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release
- Jackson, A. The McKell Institute. Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. Oct 2019. 31 p. Available from: https://mckellinstitute.org.au/research/reports/disability-rare-disease/
