Thursday, 9 March 2023
Statements by Members
Rare Voices Australia
Rob Mitchell (McEwen, Australian Labor Party) Share this | Link to this | Hansard source
Last week I was fortunate enough to attend the annual parliamentary event with Rare Voices Australia. Rare Voices Australia is an organisation that advocates and educates us about those who live with rare diseases. There are over 7,000 rare diseases in Australia, and an estimated two million Australians live with rare disease, that being around eight per cent of the population. Through this event, we had the privilege of listening and learning from all those who came here. I was proud to be at the event because we are dedicated to supporting those who live with rare disease, and we are continuously working with them to improve education and policy around health.
Labor knows the importance of having affordable medication. While we would hope and ask pharmaceutical companies to show some compassion for the people living with rare disease, we know that governments often have to step in to help relieve some of the burden. We have stepped up by fulfilling our election commitments we made to the people at the last election.
At the event, I was able to catch up with my long-time friend and fierce advocate Nicole Miller. Anyone who's ever met Nicole knows how passionate she is about supporting people with rare diseases but also how passionate she is about getting quality health care to everyone. I also had the pleasure of meeting with passionate Australian PCD president Caroline Kruljue, who is a friend and former constituent. She's now in the seat of Hawke. We talked about the issues they're facing in education and the inability to get medications that actually help them live a better quality of life and contribute to society.
Thank you to my friends the member for Macarthur and the member for Kooyong for doing such great work.