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.
Stakeholder Reference Group
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).
Key Components of the Rare Disease Disability Project
- 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
Broader Rare Disease Disability Advocacy
You can read RVA’s disability-related submissions that focus on broader rare disease disability advocacy via this webpage.
Rare Disease Disability Toolkit
The nationally codesigned Rare Disease Disability Toolkit – new resources released.
Rare Disease Disability Project News
RVA is sharing updates about the Rare Disease Disability Project via its monthly eNewsletter.
