Approximately eight per cent of Australians live with a rare disease. This equates to around two million of our fellow Australians. We’re both MPs of different political persuasions, however we are united in our goal to raise awareness about the impacts and prevalence of rare diseases in our communities.
Oftentimes in politics, there is far more that unites us than divides us – so it is the case when it comes to rare diseases.
Working together in the Parliament, it became apparent to us both that there is a need to further raise awareness about the issues faced by Australians living with rare diseases. The group was formed with the goal of providing a platform for that very purpose, and to ensure that Australians living with rare diseases are provided a voice at the highest levels of Government.
As Co-Chairs of this group, and through working closely together on the Standing Committee on Health, Aged Care and Sport, we routinely engage with stakeholders such as Rare Voices Australia and other patient advocacy groups to find out how we can better support Australians living with rare diseases. The Group provides a forum for to further engage with our other colleagues about these important issues, and to ensure that the voices of Australians living with rare diseases are heard.
We look forward to continuing to further engaging with our colleagues throughout the 46th Parliament and beyond, and hope that the group is able to assist in improving the quality of life of so many Australians living with rare diseases, through promoting evidence-based policy.