Rare Disease Disability Project News: September 2025
Below are the updates for the Rare Disease Disability Project for September 2025.
Stakeholder Reference Group
The Stakeholder Reference Group (SRG) met this month and approved the design principles for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit) and the resource topics for Stage 1 of the Toolkit. Stage 1 resources will be available on RVA’s website in December 2025.
Rare Disease Disability RVA Partner Project Grants
Round 2 of the Rare Disease Disability Project RVA Partner Grants opened on 18 September and close on 2 October 2025. The SRG will select three grant recipients from a shortlist of projects that meet the Grant Guidelines and Selection Criteria. Projects can focus on tailored resources for the Toolkit or be standalone resources. Organisations must be RVA Partners to apply. Learn more about the RVA Partner Project Grants at this web page.
Projects funded through grant round 1, led by RVA Partners Mito Foundation and Tuberous Sclerosis Australia, have commenced with involvement from the SRG and some Rare Disease Disability Network (RDDN) members.
Rare Disease Disability Network
The next Rare Disease Disability Network (RDDN) meeting will take place on 29 October. RDDN members will share their feedback on Stage 1 of the Toolkit and continue engaging in discussions about disability reform. The RDDN is open to leaders from RVA Partner groups/organisations and other invited sector stakeholders. Learn more about the RDDN at this web page.
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.
Virtual Kitchen Table Peer Support Sessions
Two virtual kitchen table peer support sessions were held on 25 September. The conversations focused on self-care and rare disease disability. The key question was: Where do you go for help? These sessions help bring the community’s voice to the Rare Disease Disability Project. The next sessions are being held on 20 November 2025.
Who Are These Sessions For?
These sessions are for members of the general public living with rare disease disability or caring for people living with rare disease disability.
Note: Please do not register for these sessions if you are an RVA Partner representative. You are welcome to join the RDDN. Email RVA to join: disabilityprojects@rarevoices.org.au
For the latest updates about the Rare Disease Disability Project, visit this web page.
