Rare Disease Disability Project News: August 2025
Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability.
You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).
Below are the updates for the Rare Disease Disability Project for August 2025.
Stakeholder Reference Group
The Stakeholder Reference Group (SRG) has established the priorities for the first release of resources for the Rare Disease Disability Toolkit. These resources will be available in December 2025 and will be hosted on RVA’s website.
Rare Disease Disability RVA Partner Project Grants
The second grant round for the Rare Disease Disability Project RVA Partner Grants will open on 18 September 2025 and close on 2 October 2025. Organisations must be RVA Partners to apply.
Shortlisted grant recipients will be selected by the SRG, and projects can focus on tailored resources for the nationally codesigned Rare Disease Disability Project Toolkit or be standalone resources. Full details will be distributed to RVA Partner organisations and the Rare Disease Disability Network (RDDN). Three grants will be awarded as part of grant round 2.
Learn more about the RVA Partner Project Grants at this web page.
Virtual Kitchen Table Peer Support Sessions
The next virtual kitchen table peer support sessions will be held on 25 September. 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: Thursday, 25 September 2025
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 topic for these sessions is, Self-care and rare disease disability: where do you go for help?
Come and share any hints and tips, ideas and learn from others and connect through this peer support session. Please send any questions you may have to: disabilityprojects@rarevoices.org.au
Note: If you are an RVA Partner representative, you are welcome to join the RDDN as these sessions are for the general public. Email RVA to join: disabilityprojects@rarevoices.org.au
Rare Disease Disability Network
The RDDN met on 20 August bringing together 30 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. The successful recipients from grant round 1 of the RVA Partner Project Grants (there are 2 rounds in total), Mito Foundation and Tuberous Sclerosis Australia, presented an overview of their projects to the RDDN. Disability reform discussions included presentations from the Department of Health, Disability and Ageing on NDIS New Framework Rules that are currently under development and the Department of Infrastructure, Transport, Regional Development, Communications, Sports and the Arts on co-designing the new Aviation Disability Standards. Learn more about the RDDN at RVA’s website.
Rare Disease Disability Network Showcase
Planning is well underway for the end-of-year in-person RDDN Showcase on 2 December 2025 in Brisbane ahead of the International Day of People with Disability on 3 December. Invitations have been distributed to those invited. Attendance is by invitation only to ensure appropriate representation across the sector. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders for the first time in person. Those invited must RSVP by Friday, 31 October to attend.
For the latest updates about the Rare Disease Disability Project, visit this web page.
