Rare Disease Disability Project News: May 2026

Below are the updates for the Rare Disease Disability Project for May 2026.

Stakeholder Reference Group

Stakeholder Reference Group (SRG) members provide lived experience guidance to the Rare Disease Disability Project (the Project). In May, SRG members contributed to the review of the next round of Rare Disease Disability Toolkit (the Toolkit) resources and are participating in co-design with some RVA Partner Projects.

Virtual Kitchen Table Peer Support Sessions

Two virtual kitchen table peer support sessions were held on Wednesday, 13 May 2026. The topic was, Managing the life admin – tools, tips and strategies. 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.

“I was made to feel welcome and could share as much information as I felt comfortable. It was casual but informative.” – participant

The final two sessions will be co-hosted with Rare Disease Disability Network (the RDDN) members — Myasthenia Alliance Australia (MAA) on 5 August and Genetic Alliance Australia (GAA) on 2 September.

Learn more about the Virtual Kitchen Table Peer Support Sessions at this web page.

Rare Disease Disability Network

The RDDN met on 20 May. Members engaged in meaningful discussions about disability reform collaboration and how to better support the rare disease disability community to have a stronger voice and more say in decisions. Members also showcased programs and innovations and shared cross-sector insights to help strengthen capability across the rare disease disability sector. Immune Deficiencies Foundation Australia spoke about their Circle of Support peer mentoring program and Leukodystrophy Australia spoke about the value of connecting with local disability networks to promote the needs of rare disease disability and the Toolkit.

If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network. Email RVA to join: [email protected]

Rare Voices Australia Partner Project Grants

RVA Partner Project Grants continued to progress in May. Learn more about the RVA Partner Project Grants at RVA’s website.