Rare Disease Disability Project News: April 2025

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.

RVA distributes an update regarding the Rare Disease Disability Project in our monthly eNewsletter. The April 2025 update is included below.

• RVA received several applications for the Stakeholder Reference Group that will guide the Rare Disease Disability Project (the Project). The Project’s activities will identify and aim to address gaps in peer support and self-advocacy for people living with rare disease disability. Thank you to everyone who lodged an expression of interest (EOI). RVA is making our way through the EOIs and will be looking to appoint the SRG as soon as possible
• We worked with Rare Disease Disability Network (the RDDN) members to conduct an environmental scan of existing resources/programs in the disability space that are useful to people living with rare disease disability. The RDDN is an RVA-led network of leaders from RVA Partner groups/organisations
• Commenced work on a dedicated web page for the Project that will be housed on RVA’s website. We’ll update stakeholders once the page is live
• Planning is underway for the first round of virtual kitchen table peer support sessions, which will be held on 22 May. One session will be held for people living with rare disease disability and a separate session will be held for caregivers of people living with rare disease disability. The topic for these initial sessions is Rare Disease Disability Resources: What’s Working? What’s Missing? Come and share the resources and strategies you use to navigate rare disease disability needs in health, education, housing, employment, and the National Disability Insurance Scheme (NDIS). Share ideas, learn from others and connect through this peer support session.

Please send any questions you may have about the Project to: disabilityprojects@rarevoices.org.au