Rare Voices 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 (Parliamentary Friends Group) 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. Karen Tighe shared her experience of living with encephalitis, while Monique Garcia spoke about being the mother and carer of a child living with a rare disease.
RVA thanks Co-Convenors of the Parliamentary Friends Group, the Hon Matthew Swinbourn MLC, the Hon Donna Faragher MLC and the Hon Stephen Pratt MLC, for their ongoing support of the rare disease community. We also thank the Parliamentarians who attended for their support of Rare Disease Day and the estimated two million Australians living with a rare disease.
Why are Parliamentary Events important?
Parliamentary Events provide stakeholders, including people living with a rare disease, with the opportunity to meet and speak with politicians to further highlight rare diseases. 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.