Rare Disease Disability Project News: July 2026

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

Stakeholder Reference Group

In July, Stakeholder Reference Group (SRG) members shared their lived experience to support the co-design of RVA Partner Projects.

Virtual Kitchen Table Peer Support Sessions

The next virtual kitchen table peer support sessions will be held on Wednesday, 5 August 2026. The topic for these sessions is, Coping with change and transitions.

See the flyer for more information.

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

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, Myasthenia Alliance Australia.

“The Myasthenia Alliance Australia is honoured to partner with RVA for this discussion. Living with Myasthenia, a rare auto-immune condition, often means adapting to change, whether that’s managing fluctuating symptoms, facing new challenges, or navigating support and unexpected setbacks. We’re looking forward to sharing our lived experience and connecting with others who are going through similar circumstances.” – Myasthenia Alliance Australia

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

*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]

Rare Disease Disability Network

Rare Disease Disability Network (RDDN) members met on 22 July to discuss opportunities for people living with rare disease disability to participate in testing the new NDIS Support Needs Assessment (SNA). Attendees also considered how to support strong representation of the rare disease disability community in this testing ahead of its rollout from April 2027. The session was facilitated by Alexandria Rosenthal, BM Engagement Branch, Engagement and Improvement Division, National Disability Insurance Agency (NDIA) and Fiona Lawton, RVA’s Disability Advocacy Manager.

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]