Rare Voices Australia (RVA) thanks everyone who attended our Rare Disease Day Parliamentary Event in Canberra on 8 March 2023 hosted by Dr Mike Freelander MP (Chair, Standing Committee on Health, Aged Care and Sport and Co-Chair, Parliamentary Friends of Rare Diseases). 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.
Read the speech delivered by RVA’s Chief Executive Officer, Nicole Millis.
As the national peak body for Australians living with a rare disease, 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.
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 acknowledges the many Parliamentarians who attended for their support of Rare Disease Day and the estimated two million Australians living with a rare disease.
Special thanks to our RVA Ambassadors and RVA Partner organisation leaders who also joined us. 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.
