Thank you to those who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event hosted by the Parliamentary Friends of Australians Living with Rare Diseases on 11 February 2025. Over 100 guests, including people living with a rare disease; governments; key peak bodies; researchers; clinicians; and industry, joined us making the event one of RVA’s largest-ever Parliamentary Events. This is testament to the momentum gained by the rare disease sector in recent years.
Acknowledgements
RVA thanks the following parliamentarians who spoke at the event:
- Hon Mark Butler MP, Minister for Health and Aged Care
- Senator the Hon Anne Ruston, Shadow Minister for Health and Aged Care
- Dr Mike Freelander MP, Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases and Member for Macarthur
- Dr Monique Ryan, Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases and Member for Kooyong
- Senator Wendy Askew, Co-Chair of the Parliamentary Friends of Australians Living with Rare Diseases and Senator for Tasmania
Given the upcoming 2025 Federal Election, this was the final gathering of the Parliamentary Friends of Australians Living with Rare Diseases. RVA will pursue its reformation post-election. RVA also thanks Fiona Lawton, our Disability Advocacy Manager, for sharing her family’s story and her experience with rare disease disability advocacy. You can read Fiona’s speech on RVA’s website. Finally, thanks to Dr Tarun Weeramanthri AM, RVA’s new Chair, who took the opportunity to introduce himself and share his vision for RVA.
Additionally, we thank everyone who attended the Parliamentary Event, particularly our RVA Partners (rare disease group/organisation representatives). We understand travelling to Canberra isn’t always easy, but your efforts make all the difference as the ongoing collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases continues.
Special thanks also to the RVA Board 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. Nearly all the estimated two million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability. The disability impacts of living with a rare disease often aren’t recognised by policymakers. Enabling politicians to gain a better understanding and awareness about rare diseases is even more important as 2025 is a Federal Election year.
About Rare Disease Day and Its Significance Globally and Locally
Rare Disease Day is marked on the last day of February annually. In 2025, Rare Disease Day falls on 28 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. Globally, 300 million people worldwide live with a rare disease. Locally, Rare Disease Day is also an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community, with the aim to achieve the best outcomes for Australians living with a rare disease.
The 2025 Rare Disease Day video showcases people living with a range of rare diseases from around the world, including former RVA Ambassador, Tammie Rees, and her daughter Ava who lives with Maple Syrup Urine Disease, a rare metabolic disease. Watch the video below and download the campaign materials via the official Rare Disease Day website. You can also submit any upcoming Rare Disease Day events via this web page.
As the national peak body for Australians living with a rare disease, RVA is the national alliance representing Australia in annual Rare Disease Day preparations. We are also on the Rare Disease Day Steering Committee, which takes a longer-term strategic view of the campaign.
