Rare Disease Disability Project News: July 2025
In June, RVA Partner organisations were invited to apply for funding for RVA Partner Project Grants as part of the work being undertaken for the Rare Disease Disability Project (the Project). RVA is proudly delivering projects for the Peer Support and Capacity Building grant for the NDIS. The Project is being guided by a Stakeholder Reference Group (SRG) comprising people with lived experience of rare disease disability and diverse representation. There are 2 grant rounds, 1 was in June 2025 and another is scheduled for September 2025. We received a high number of applications and 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 has offered grants to 2 recipients: Mito Foundation and Tuberous Sclerosis Australia and are in the process of finalising both grant agreements. Mito Foundation’s application detailed the creation of simple, useful resources to help people with progressive conditions and their carers get the emotional and practical support they need as their condition worsens. Tuberous Sclerosis Australia’s application focused on a Sibling Support Program to build peer to peer support and increase capacity for families impacted by rare disease disability. We will update the RVA Partner Project Grants web page on RVA’s website with more information as this work progresses.
Stakeholder Reference Group
In August, the Stakeholder Reference Group will set priorities for the first stage of the nationally co-designed Rare Disease Disability Toolkit (the Toolkit).
Virtual Kitchen Table Peer Support Sessions
Virtual kitchen table peer support sessions were held on 24 July. Based on feedback, these sessions have been shortened to 1 hour and an evening session was added for caregivers of people living with rare disease disability. The conversations focused on people navigating the system and what’s working for them. The next sessions are being held on 25 September. Register at RVA’s website.
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 Rare Disease Disability Network (RDDN). Email RVA to join: disabilityprojects@rarevoices.org.au
Rare Disease Disability Network
The next RDDN meeting will take place on 20 August. RDDN members will help to review and codesign the Toolkit resources, share feedback and continue ongoing 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 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. Attendance is by invitation only to ensure appropriate representation across the sector. Invitations will be distributed to those invited in August and will include more information, including the Agenda.
