Rare Disease Disability Project News: October 2025

Below are the updates for the Rare Disease Disability Project for October 2025.

Stakeholder Reference Group

In October, the SRG:

• Provided input into the first resources being developed for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit)
• Assessed applications for round 2 of the RVA Partner Project Grants
• Reviewed current RVA Partner projects to ensure ongoing alignment with the priorities identified by the SRG

Toolkit resources will be progressively released with the first resources scheduled to be available on RVA’s website in December 2025.

RVA Partner Project Grants

RVA Partner organisations were invited to apply for funding as part of the second Rare Disease Disability Project grant round in September. Once again, RVA received a high number of applications. We thank the RVA Partners that took the time to apply. Applications were assessed on how well they aligned with grant objectives and deliverables. They were then ranked by the SRG. Based on the SRG’s ranking, RVA is delighted to offer grants to 3 RVA Partners:

• Smith-Magenis Syndrome Australia is developing self-advocacy tools for parents and carers of children with delayed development to communicate better with health professionals and navigate health systems and disability supports
• Batten Disease Support and Research Association Australia (BDSRA) is co-designing resources based on lived experience to help families, educators, and disability workers understand and respond to the episodic and fluctuating impacts of rare disease disability
• Syndromes Without A Name (SWAN) Australia is creating an online training program for Peer Support Group Leaders. Resources will help parents and carers of children and adults with undiagnosed rare disease conditions connect with others and get the disability support that’s right for their needs

Learn more about RVA Partner Project Grants at this web page.

Rare Disease Disability Network 

The RDDN met on 29 October bringing together almost 40 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. Discussions included:

• Presentations from RVA Partners offered grants as part of grant round 2 to provide an overview of their projects
• A presentation by the National Disability Insurance Agency’s (NDIA) Children’s Policy and Pathways Branch on the new Childhood Early Intervention Pathway for children under 9
• RVA’s Submission to the Inquiry into the Thriving Kids Initiative
• RVA’s Submission to the review of the Disability Discrimination Act 1992
• Discussion of a joint response to the NDIS Evidence Advisory Committee September 2025 consultation, which closes on 9 November 2025

Learn more about the RDDN at RVA’s website.

Rare Disease Disability Network Showcase

Registrations close tomorrow (31 October) 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. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders for the first time in person.  Attendance is by invitation only to ensure appropriate representation across the sector. RVA looks forward to welcoming those attending in December!

Virtual Kitchen Table Peer Support Sessions

The next virtual kitchen table peer support sessions will be held on 20 November 2025. 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, 20 November 2025

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, Getting the Right Support: Ensuring Quality in Rare Disease Disability Care.

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 RDDN as these sessions are for the general public. Email RVA to join: disabilityprojects@rarevoices.org.au

For the latest updates about the Rare Disease Disability Project, visit RVA’s website. For all questions related to this project, please email: disabilityprojects@rarevoices.org.au