On 2 December 2025, Rare Voices Australia (RVA) facilitated the inaugural Rare Disease Disability Network Showcase (the Showcase) in Brisbane, ahead of the International Day of People with Disability (3 December). This invitation-only event brought together more than 40 leaders from rare disease groups/organisations and other key stakeholders across the sector, including people with lived experience of rare disease disability.
The Showcase was a key component of the Rare Disease Disability Project (the Project). RVA is proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS). The Showcase marked the first in-person gathering of the Rare Disease Disability Network, which includes leaders from RVA Partner organisations and other invited stakeholders, who met regularly online throughout the year.
Recap of the Day and Acknowledgements
Nicole Millis, RVA’s Chief Executive Officer, opened the Showcase, which featured panel discussions, an engagement activity, and networking opportunities. Attendees provided additional feedback on the first round of resources developed for the nationally codesigned Rare Disease Disability Toolkit (Toolkit) and heard progress updates on projects led by RVA Partners, Tuberous Sclerosis Australia (TSA) and Mito Foundation. We thank TSA and Mito Foundation for sharing their work to date.
Special thanks to members of the Project’s Stakeholder Reference Group who shared their experiences as part of the opening panel discussion. Panellists reminded attendees why tailored, quality resources developed by the rare disease disability community are essential in meeting the unique and complex needs of people living with rare disease disability. The panel concluded with powerful calls to action for future systemic improvements.
RVA also acknowledges the contributions of those who joined the Multi-Stakeholder Panel, including:
- Alexandria Rosenthal, Branch Manager, Engagement & Inclusion, Service Design and Improvement, National Disability Insurance Agency
- James Parker, Manager, Disability Health Policy, System Policy Branch, Strategy, Policy and Reform Division, Queensland Health, Queensland Government
- Sharon White, Director Strategic Policy (Disability), Department of Families, Seniors, Disability Services and Child Safety, Queensland Government
- Associate Professor Honey Heussler, Medical Director, Child and Youth Community Health Services, Consultant Paediatrician Child Development, Children’s Health Queensland
Additionally, RVA thanks all attendees for their participation and engagement. We thank our diverse range of speakers who generously shared their expertise and perspectives. Together, we are transforming this space to ensure equitable access to disability care and support for the estimated two million Australians living with rare disease disability impacts and their families.
What Attendees Said About the Showcase
“It was a privilege to join rare disease leaders, advocacy organisations, and sector partners for this first-ever in-person gathering. The Showcase provided an invaluable opportunity to connect, collaborate, and contribute to the conversation on strengthening supports for people living with rare diseases and disabilities. We extend our sincere thanks to Rare Voices Australia for their leadership… The day was informative, empowering, and a meaningful step toward better outcomes for the rare disease community.”
– RVA Partner
“It was great to see all of the hard work going into the Toolkit – congrats!”
– Sector stakeholder
“I think we can all agree that the inaugural Rare Disease Disability Network Showcase was a glowing success. I am very grateful I was able to participate in the day and learn so much from all the presenters, panellists, facilitators and participants.” – Government stakeholder
“It was inspiring to see the collective progress made throughout the year. The Showcase provided a valuable opportunity to connect, collaborate and reflect on the work being done to strengthen support, improve systems and elevate the voices of those most impacted.” – RVA Partner
“The day was a fantastic source of information for all who attended, I really do understand what it takes to make a day like this come together and have everyone walk away having gotten a lot from it… it’s no mean feat… hats off to you!” – Government stakeholder
About the Rare Disease Disability Project
As the national peak body for Australians living with a rare disease, 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 NDIS. This exciting, first-of-its kind 2-year Project will conclude in December 2026. The Project is being guided by a Stakeholder Reference Group comprising people with lived experience of rare disease disability and diverse representation from priority populations. The Rare Disease Disability Network, including the Showcase, is a key component of the Project.
