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Rare Voices Australia finalises rare disease toolkit resources and showcase date
Key points5 points
- Two new toolkit resource packages from RVA Partner Projects were previewed: Mito Foundation's disability support as needs change package and Batten Disease Association's Living Well with Change package.
- Mito Foundation presented its NDIS Navigation Service as a capacity-building innovation for the rare disease disability sector.
- The Rare Disease Disability Network's final virtual session took place on 14 October 2026.
- The face-to-face Rare Disease Disability Network Showcase is scheduled for 19 November 2026.
- RVA Partner representatives can join the Rare Disease Disability Network by emailing Rare Voices Australia.
Summary
Rare Voices Australia's Rare Disease Disability Project reported its October 2026 progress, with Stakeholder Reference Group members reviewing final resources for the Rare Disease Disability Toolkit.
The Rare Disease Disability Network held its last virtual session on 14 October, previewing two new resource packages from RVA Partner Projects: Mito Foundation's guidance on disability support as needs change, and a Living Well with Change package from the Batten Disease charity. Mito Foundation also presented its NDIS Navigation Service as an innovation model for the sector. The network's in-person Showcase is scheduled for 19 November, and members discussed collaboration beyond the project's end.