Thank you to everyone for your support of 2023 Rare Disease Day (28 February) and the estimated two million Australians living with a rare disease. Several Rare Disease Day themed events organised by our Rare Voices Australia (RVA) Partner organisations (rare disease groups) and other stakeholders took place to mark the day. It is wonderful to see Rare Disease Day continuing to gain momentum each year. Thank you to everyone for your invaluable contribution!
Watch the video for a snapshot of the events that took place globally.
As the national peak body for Australians living with a rare disease, RVA has put together a summary of highlights for 2023 Rare Disease Day in Australia.
Rare Voices Australia’s Rare Disease Day Parliamentary Event
Dr Mike Freelander MP (Chair, Standing Committee on Health, Aged Care and Sport and Co-Chair, Parliamentary Friends of Rare Diseases) hosted RVA’s Rare Disease Day Parliamentary Event on 8 March. The event theme was, Ensuring Equity for Australians Living With a Rare Disease. Thanks to RVA Ambassador, Renae Wood, for sharing her personal story of living with epidermolysis bullosa and the difference equity can make for people living with a rare disease.
Thank you to our host Dr Freelander, Member for Macarthur, and 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
- Senator Wendy Askew, Senator for Tasmania and Co-Chair, Parliamentary Friends of Rare Diseases
- Dr Monique Ryan, Member for Kooyong and Co-Chair, Parliamentary Friends of Rare Diseases
RVA was pleased to provide a progress update on implementation of the National Strategic Action Plan for Rare Diseases, which requires ongoing multi-partisan collaboration and support.
RVA acknowledges the many political attendees, including over 20 Parliamentarians and Assistant Ministers (listed below), who attended for their support of Rare Disease Day.
- Hon Ged Kearney MP, Assistant Minister for Health and Aged Care
- Hon Dr Andrew Leigh MP, Assistant Minister for Competition, Charities and Treasury
- Hon Emma McBride MP, Assistant Minister for Mental Health and Suicide Prevention; and Assistant Minister for Rural and Regional Health
Special thanks to our RVA Ambassadors, RVA Partner organisation leaders and other stakeholders who also joined us. See more photos from the event.
Parliamentary Event Hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia
RVA was pleased to attend a Rare Disease Day Parliamentary Event on 21 February hosted by the Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia. RVA’s Chief Executive Officer, Nicole Millis; Director, Kane Blackman; Scientific and Medical Advisory Committee member, Clin/Prof Gareth Baynam; Education Project Officer, Jess Brooklyn; and RVA Ambassador, Andrew Bannister were pleased to attend. The event focused on the experiences of people living with a rare disease. Click here to read more.
Global Chain of Lights and Landmark Illuminations in Australia
The Global Chain of Lights is a key Rare Disease Day initiative, with the global community coming together to illuminate landmarks in support of people living with a rare disease. Over 60 landmarks (that RVA is aware of) were illuminated. A big thank you to our small group of volunteers who secured landmark illuminations for 2023 with assistance from RVA as needed and whose efforts are always very much appreciated.
Several politicians and the Australian Government Department of Health and Aged Care posted about Rare Disease Day and RVA’s Parliamentary Event across social media.
RVA was excited to take over the official Rare Disease Day social media accounts on 16 February. Thank you to our RVA Ambassadors who filmed short videos for Instagram and TikTok. The Instagram Reel filmed by RVA Ambassador Renae Wood generated over 27,500 views on Instagram and Facebook. Amazing!
Several RVA Partner organisations secured media coverage on Rare Disease Day. Congratulations to everyone who helped to spread the word about the day and rare diseases generally!
What is Rare Disease Day?
Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. RVA is:
- The national alliance that represents Australia for Rare Disease Day annually
- A member of the Rare Disease Day Steering Committee that oversees the campaign in the longer-term
The Importance of Rare Disease Day Locally
Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers on the issues faced by the Australian rare disease community, in an effort to achieve meaningful change. Pillar 1 of the National Strategic Action Plan for Rare Diseases is Awareness and Education, while ‘State, national and international partnerships’ is a critical enabler.
Each year, Rare Disease Day continues to build momentum and planning is already underway for next year, which is a leap year. This means Rare Disease Day will take place on the rarest day of the year (29 February).