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 March 2025 update is included below.
- RVA welcomed Amanda Dickey, our Disability Project Officer. Amanda will work on the Rare Disease Disability Project (the Project)
- We lodged an expression of interest process for the Stakeholder Reference Group (SRG) that will guide the Project. For more information, including more about the Project, SRG and Terms of Reference (an Easy English version is available), visit RVA’s website
- RVA hosted the first Rare Disease Disability Network Meeting today (31 March) with over 20 attendees from rare disease groups/organisations
Please send any questions you may have about the Project to: [email protected].
