Rare Disease Disability Project News: February 2026

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

Rare Disease Disability Toolkit

The first round of resources for the nationally co-designed Rare Disease Disability Toolkit (the Toolkit) will be launched at the Rare Disease Day Federal Parliamentary Event in Canberra on 2 March 2026. The resources will be available on a dedicated webpage for the Toolkit at RVA’s website.

Stakeholder Reference Group

In February, Stakeholder Reference Group (SRG) members continued contributing to the Toolkit resources.

Rare Voices Australia Partner Project Grants

RVA Partner Project Grants continue to progress. Please see RVA’s website for the latest updates.

Virtual Kitchen Table Peer Support Sessions

The next virtual kitchen table peer support sessions will be held on Wednesday, 11 March 2026.

These sessions are open to people:

• Living with rare disease disability.
• Caring for someone living with rare disease disability.
• Who are not in a formal role in any RVA Partner group/organisation*.

The sessions are especially helpful for people living with rare disease disability and caregivers who:

• Are looking for community, understanding, and support.
• May not have or are still looking for a condition-specific support group.
• Are newly diagnosed or navigating new challenges.

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.

Session Details

Date: Wednesday, 11 March 2026

Registration

Session for people living with rare disease disability (12pm – 1pm AEDT)

Session for caregivers of people living with rare disease disability (8pm – 9pm AEDT)

The topic for these sessions is, Preparing for natural disasters and emergencies with rare disease disability.

Come and share any hints and tips, ideas and learn from others and connect through this peer support session. Learn more about the Virtual Kitchen Table Peer Support Sessions at RVA’s website.

*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: disabilityprojects@rarevoices.org.au