Rare Disease Disability Toolkit (the Toolkit) development was codesigned with people living with rare disease disability and facilitated by Rare Voices Australia (RVA). RVA is the national peak body for Australians living with a rare disease.

The Toolkit was funded by the Australian Government through the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).

1. Includes new peer-to-peer supports.
2. Builds capacity in disability rights and self-advocacy.
3. Supports people to better access and navigate disability and other systems (such as health, education and employment).

Thank you to everyone who has contributed to the Toolkit:

• Rare Disease Disability Project Stakeholder Reference Group
• Rare Disease Disability Network members

More resources will be added to the Toolkit between now and December 2026.

A disease is a condition with a specific pattern of clinical signs, symptoms, and findings, and is considered rare if it affects fewer than, or equal to, 5 in 10,000 people.¹

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.^1,3 The disability impacts of living with a rare disease often aren’t recognised by policymakers. There are at least 7,000 known rare diseases, with new diseases being discovered regularly.

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:

1. Neurological/neurodevelopmental – conditions that affect the brain, nerves, or how the brain develops.
2. Progressive/degenerative – conditions that get worse and more serious over time.
3. Episodic/fluctuating – the impacts come and go, and can change from day to day.
4. Children with delayed development – children who take longer to learn and do things.
5. Undiagnosed rare disease conditions – there is currently no name or explanation for the condition.

1. Commonwealth of Australia. Department of Health, Disability and Ageing. National Strategic Action Plan for Rare Diseases. Canberra; 2020. Accessed on 10 October 2025. Available from the Department of Health, Disability and Ageing’s website.
2. Australian Government. Australian Public Service Commission. Definition of disability. September 2019. Accessed on 10 October. Available from the Australian Public Service Commission’s website.
3. Australian Government. Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings. July 2024. Accessed on 10 October. Available from Australian Bureau of Statistics’ website.