Rare Disease Disability Project News: October 2026

Below are the updates for the Rare Disease Disability Project for October 2026.

Stakeholder Reference Group

In October, Stakeholder Reference Group (SRG) members evaluated the final resources for the Rare Disease Disability Toolkit developed through the RVA Partner Projects.

Rare Disease Disability Network

The Rare Disease Disability Network (RDDN) met on 14 October for the final virtual session before the face-to-face Showcase on 19 November. The session featured updates on two new toolkit resources from RVA Partner Projects:

• Mito Foundation’s disability support as needs change resource package
• Batten Disease Support and Research Association Australia’s Living Well with Change resource package

As part of the innovation segment, which is designed to strengthen capacity across the rare disease disability sector, Mito Foundation showcased their NDIS Navigation Service.

Members also reflected on the important role of the RDDN in strengthening outcomes for people living with rare disease disability and explored opportunities for ongoing collaboration beyond the Rare Disease Disability Project.

Learn more about the RDDN at RVA’s website.

If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network. Email RVA to join: [email protected]