Rare Voices Australia (RVA) thanks everyone who attended our 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February). Hosted by the Parliamentary Friends of Rare Diseases, the event theme was Progress Beyond Policy.
Read the speech delivered by RVA’s Chief Executive Officer, Nicole Millis.
Guests also heard about Rare Disease Centres of Expertise and Australia’s first National Recommendations for Rare Disease Health Care (the Recommendations), which launched on Rare Disease Day. The Recommendations were written to help health professionals provide quality care for people living with rare disease, including people with a diagnosed rare disease and those who have not yet received a diagnosis.
Acknowledgements
Thank you to the following Members of Parliament who spoke at RVA’s biggest-ever Parliamentary Event and who continue to show their support for the estimated two million Australians living with a rare disease:
- Mark Butler MP, Minister for Health and Aged Care
- Senator Anne Ruston, Shadow Minister for Health and Aged Care
- Dr Monique Ryan, Co-Chair, Parliamentary Friends of Rare Diseases and Member for Kooyong
- Dr Mike Freelander MP, Co-Chair, Parliamentary Friends of Rare Diseases and Member for Macarthur
- Senator Wendy Askew, Co-Chair, Parliamentary Friends of Rare Diseases and Senator for Tasmania
We also thank our other speakers:
- Dr (Elizabeth) Emma Palmer, senior clinical lecturer at University of New South Wales, Sydney, and leading co-author of the Recommendations
- Dr Falak Helwani, Research and Evaluation Manager, RVA
Special thanks to the RVA Board Directors and Scientific and Medical Advisory Committee members who joined us on Rare Disease Day. We also thank our RVA Ambassadors.
The Importance of Rare Disease Day
Rare Disease Day is an opportunity to celebrate all we have achieved as a sector and consider how we can continue building on the momentum already generated to accelerate progress beyond policy, while maintaining a person-centred approach as the ongoing implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) continues.
Action Plan implementation requires ongoing multi-partisan collaboration and support, and RVA looks forward to continuing to advocate for the best outcomes for Australians living with a rare disease.
