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. Learn more about the Project at this web page.
RVA distributes an update regarding the Rare Disease Disability Project in our monthly eNewsletter. The May 2025 update is included below.
- The Stakeholder Reference Group, which will guide the Rare Disease Disability Project, has been established and met for the first time on 28 May. The group discussed gaps and priorities for people living with rare disease disability.
- The first virtual kitchen table peer support sessions were held on 22 May. A session was held for people living with rare disease disability and a separate session was held for caregivers of people living with rare disease disability. Based on participant feedback, the next sessions will be offered as 1-hour sessions with an option for an evening session for the next round.
- The Rare Disease Disability Network (RDDN) met on 29 May and has been collaborating to develop an audit of existing resources and identify gaps and priorities. RDDN members will have the opportunity to submit an expression of interest for the first round of RVA Partner Project Grants shortly.
Expected Outcomes
- A nationally co-designed 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.
Please send any questions you may have about the Project to: [email protected].
