Rare Disease Disability Project News: June 2025
As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). This exciting, first-of-its kind 2-year Project will conclude in December 2026. Learn more about the Project at this web page.
Dedicated Rare Disease Disability Project Web Page
RVA has launched a dedicated web page on RVA’s website for the Rare Disease Disability Project to provide stakeholders with updates. Please continue checking RVA’s website for the latest updates.
Rare Disease Disability Virtual Kitchen Table Peer Support Sessions – Thursday, 24 July 2025
The next rare disease disability virtual kitchen table peer support sessions will be held on Thursday, 24 July. 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.
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.
The topic for these sessions is Navigating the system – what’s working for you?
Come and share any hints and tips, ideas and learn from others and connect through this peer support session.
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 (email RVA: disabilityprojects@rarevoices.org.au)
Rare Disease Disability RVA Partner Project Grants
RVA Partner organisations have been invited to apply for funding as part of the first round of Rare Disease Disability RVA Partner Project Grants. There will be 2 grant rounds, 1 in June 2025 and another in October 2025. Shortlisted grant recipients will be selected by the Stakeholder Reference Group (SRG), which is guiding the Rare Disease Disability Project. 5 grants in total are available to fund projects related to rare disease disability. Projects can focus on tailored resources for the Rare Disease Disability Project Toolkit or be standalone resources. RVA has developed Grant Guidelines, which include information about the Selection Criteria and the process for shortlisting applications for consideration by the SRG. 2 grants will be awarded as part of grant round 1. Organisations must be RVA Partners to apply.
Next Stakeholder Reference Group Meeting
The SRG will meet on 17 July 2025 to select the grant recipients from round 1 of the Rare Disease Disability RVA Partner Project Grants. The SRG will also set priorities for stage 1 of the nationally co-designed Rare Disease Disability Toolkit at this meeting.
Rare Disease Disability Network
The Rare Disease Disability Network (RDDN) met on 25 June. 25 leaders from RVA Partner organisations came together to discuss the progress of the Rare Disease Disability Project and participated in a rare disease specific consultation on the National Disability Insurance Scheme (NDIS) Supports rules led by the Department of Social Services’ (DSS) NDIS Governance, Policy and Legislation team. Network members also had the opportunity to discuss the current experiences of the rare disease disability community with the NDIS’ Branch Manager, Engagement & Inclusion and discussed future NDIS reform activities.
