Below are the updates for the Rare Disease Disability Project for March 2026.
Rare Disease Disability Toolkit
The first round of resources for the Rare Disease Disability Toolkit (the Toolkit) were launched at the Rare Disease Day Parliamentary event on 2 March 2026. Toolkit development was codesigned with people living with rare disease disability and facilitated by RVA. See the Toolkit resources at RVA’s website.
Stakeholder Reference Group
In March 2026, Stakeholder Reference Group (SRG) members prioritised additional resources for the Toolkit.
Virtual Kitchen Table Peer Support Sessions
Two virtual kitchen table peer support sessions were held on 11 March. The topic was Preparing for natural disasters and emergencies with rare disease disability. These peer support sessions offer a safe space for people living with rare disease disability and their caregivers to connect, share experiences, and feel a sense of community. Learn more about the Virtual Kitchen Table Peer Support Sessions and see the 2026 schedule at RVA’s website.
*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: [email protected]
Rare Disease Disability Network
The Rare Disease Disability Network (the RDDN) met on 18 March bringing together 20 leaders from RVA Partner organisations to discuss the progress of the Rare Disease Disability Project and engage in disability reform discussions. 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 Voices Australia Partner Project Grants
RVA Partner Project Grants continue to progress. The latest updates can be found at RVA’s website.
