Rare Disease Disability Project News: August 2026

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

Stakeholder Reference Group

In August, Stakeholder Reference Group (SRG) members shared their lived experience to support the co-design of resources for the Rare Disease Disability Toolkit.

Virtual Kitchen Table Peer Support Sessions

Thank you to RVA Partner, Myasthenia Alliance Australia, for partnering with RVA for the August Virtual Kitchen Table Peer Support sessions.

The next sessions will be held on Wednesday, 2 September 2026. The topic for these sessions is Safely sharing your rare disease disability story.

See the flyer for more information.

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.

Come and share any hints and tips, ideas and learn from others and connect through this peer support session.

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

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)

The sessions will be facilitated by RVA in partnership with RVA Partner, Genetic Alliance Australia.

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

Rare Disease Disability Network

The Rare Disease Disability Network met on 26 August. Members continued to explore how to support strong representation of the rare disease disability community in the new NDIS Support Needs Assessment testing opportunity.

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]