As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026.

The Project is being guided by a Stakeholder Reference Group (SRG) comprising people with lived experience of rare disease disability and diverse representation from priority populations (Aboriginal and Torres Strait Islander people; culturally and linguistically diverse communities; people living in regional, rural and remote areas; and other groups).

There is significant unmet need for mainstream, community, and foundational supports among Australians living with rare disease disability, including caregivers. 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

• The Stakeholder Reference Group
• The Rare Disease Disability Network
• Rare Disease Disability Virtual Kitchen Table Peer Support Sessions
• A nationally co-designed Rare Disease Disability Toolkit

The Rare Disease Disability Network (RDDN) is an RVA-led peer support and capacity building network for rare disease community-led groups/organisations and invited sector stakeholders. It will help to inform the Project. The RDDN is open to leaders from RVA Partner groups/organisations and other invited sector stakeholders.

The Rare Disease Disability Virtual Kitchen Table Peer Support Sessions are for members of the general public living with rare disease disability or caring for people living with rare disease disability. Learn more about these sessions at this web page.

•  nationally co-designed Rare Disease Disability Toolkit with resources to address gaps and priorities identified by people with lived experience of rare disease disability. The Toolkit will respond to the challenges associated with having a rare disease disability and will support stronger self-advocacy, improved system navigation, and rights-based engagement skills for people living with rare disease disability and their families/caregivers
• Increased visibility of rare disease disability across stakeholders
• Peer-support and capacity building for rare disease groups/organisations, people living with rare disease disability and their families/caregivers

RVA will share updates about the RVA Partner Projects as part of our Rare Disease Disability Project updates in our monthly eNewsletter. Subscribe to RVA’s monthly eNewsletter for the latest updates.

1. Australian Government. Australian Public Service Commission. Definition of disability. September 2019. Accessed 12 June 2025. https://www.apsc.gov.au/working-aps/diversity-and-inclusion/disability/definition-disability
2. Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings. July 2024. Accessed 12 June 2025. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release