Rare Disease Disability Project News: November 2025

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

Stakeholder Reference Group

In November 2025, Stakeholder Reference Group (SRG) members contributed their lived experience insights to some RVA Partner Projects and the review of the first resources for the nationally co-designed Rare Disease Disability Toolkit.

RVA Partner Project Grants

Representatives from the RVA Partner Projects, led by Mito Foundation and Tuberous Sclerosis Australia (TSA), continue engaging with the SRG, some Rare Disease Disability Network (RDDN) members and people living with rare disease disability to identify useful resources for the rare disease community. Round 2 Projects, led by Smith-Magenis Syndrome Australia, Batten Disease Support and Research Association Australia (BDSRA) and Syndromes Without A Name (SWAN) Australia will start in 2026. Learn more about the RVA Partner Project Grants at this web page.

Rare Disease Disability Network Showcase

The first-ever Rare Disease Disability Network Showcase is being held on 2 December 2025 in Brisbane ahead of the International Day of People with Disability. The RDDN Showcase brings together leaders from rare disease groups/organisations and other invited sector stakeholders.  Attendance is by invitation only to ensure appropriate representation across the sector. RVA looks forward to welcoming those attending in December. Learn more about the RDDN at this web page.

Virtual Kitchen Table Peer Support Sessions

Two (2) virtual kitchen table peer support sessions were held on 20 November 2025. The discussions focused on the disability and healthcare workforce and rare disease disability care and support, guided by the theme, Getting the Right Support: Ensuring Quality in Rare Disease Disability Care.  These important peer support opportunities help connect individuals and caregivers living with rare disease disability across the country and will continue in 2026.

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