Thank you to everyone who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event on 2 March 2026. Hosted by the Parliamentary Friends of Australians Living with a Rare Disease, a key aim of Rare Disease Day is to raise awareness among policymakers. The event theme was Equity for People Living with a Rare Disease, which provided the perfect opportunity to launch the first round of resources for the nationally codesigned Rare Disease Disability Toolkit, which is available at RVA’s website.
Over 100 guests, including people living with a rare disease, RVA Ambassadors, governments, key peak bodies, researchers, clinicians and industry attended, making the event one of RVA’s largest-ever Parliamentary Events. Having such a diverse range of stakeholders in attendance is testament to the momentum gained by the rare disease sector. This strong diversity is especially important as the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) continues.
Acknowledgements
RVA thanks the parliamentarians who joined us, including the following speakers:
- Hon Mark Butler MP, Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme
- Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
- Senator Wendy Askew, Co-Chair, Parliamentary Friends of Australians Living with a Rare Disease
- Dr Mike Freelander MP, Co-Chair, Parliamentary Friends of Australians Living with a Rare Disease
- Dr Monique Ryan MP, Co-Chair, Parliamentary Friends of Australians Living with a Rare Disease
RVA also thanks our Chair, Dr Tarun Weeramanthri AM, and Medical Director of the Rare Care Centre and RVA Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam, for speaking.
Special thanks to the RVA Ambassadors who joined us— Andrew, Diane, Archie, Lucy, Lauren and Ryan—and RVA Partner group/organisation representatives. We understand travelling to Canberra isn’t always easy, but your efforts make all the difference.
Additionally, thank you to the RVA Directors and Scientific and Medical Advisory Committee members who joined us.
The Importance of Federal Parliamentary Events
Parliamentary Events enable stakeholders to meet and speak with parliamentarians to further highlight rare diseases. Enabling politicians to gain a better understanding and awareness about rare diseases is vital as Action Plan implementation continues.
‘Equity for People Living with a Rare Disease’
Equity for people living with a rare disease continues to be a key focus of the global Rare Disease Day initiative.For people living with a rare disease, equity means having social opportunities, non-discrimination in education and work, and fair access to health, social care, diagnosis and treatment.
The Rare Disease Day Parliamentary Event was the perfect opportunity to showcase progress made to date, while highlighting the work still required across key areas that support equity for Australians living with a rare disease, including:
- Rare Disease Centres of Expertise.
- The launch of the first round of resources for the nationally codesigned Rare Disease Disability Toolkit.
- Health technology assessment (HTA) reform.
About Rare Disease Day
Held annually on the last day of February, Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community, with the aim being to achieve the best outcomes for Australians living with a rare disease.
