Rare Disease Disability Project News: April 2026

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

Rare Disease Disability Toolkit

The first round of resources for the Rare Disease Disability Toolkit (the Toolkit) were launched at the Rare Disease Day Parliamentary event on 2 March 2026. Toolkit development was codesigned with people living with rare disease disability and facilitated by RVA. See the Toolkit resources at RVA’s website.

Stakeholder Reference Group

Stakeholder Reference Group (SRG) members met for the second time this year in April. The SRG continues to provide lived-experience guidance for the Rare Disease Disability Project (the Project), co-design support for RVA Partner Projects and review of the next round of Rare Disease Disability Toolkit resources.

Virtual Kitchen Table Peer Support Sessions

The next virtual kitchen table peer support sessions will be held on Wednesday, 13 May 2026. The topic for these sessions is, Managing the life admin – tools, tips and strategies. Come and share any hints and tips, ideas and learn from others and connect through this peer support session.

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.

*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.

Session Details

Date: Wednesday, 13 May 2026

Registration

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

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

Learn more about the Virtual Kitchen Table Peer Support Sessions at this web page.

Rare Disease Disability Network

The next Rare Disease Disability Network (RDDN) meeting will be held on 20 May. Members receive updates about the Project and are invited to showcase innovation and share learnings to strengthen the rare disease disability sector. Members also engage in disability reform discussions to genuinely make a difference for people living with rare disease disability. Learn more about the RDDN at RVA’s website.

Rare Voices Australia Partner Project Grants

RVA Partner Project Grants continue to progress. The latest updates can be found at RVA’s website.