Rare Voices Australia (RVA) was proud to attend the official launch of the first Parliamentary Friends of People with Rare and Undiagnosed Diseases in Western Australia (WA) on 19 October.
The Parliamentary Friendship Group sees the Hon Matthew Swinbourn MLC, Hon Donna Faragher MLC and Hon Stephen Pratt MLC come together to increase awareness about rare and undiagnosed diseases in WA.
We thank the WA Premier, the Hon Mark McGowan, and Leader of the Opposition, the Hon Mia Davies MLA, for attending the event and for their support of Western Australians living with a rare disease, as well as their families and carers. RVA also thanks Mr Swinbourn for championing the formation of this Parliamentary Friendship Group and for his ongoing support of people living with a rare disease. Additionally, we thank RVA’s Deputy Chair, Kane Blackman, Clin/Prof Gareth Baynam, a member of our Scientific and Medical Advisory Committee, and Andrew Bannister, RVA supporter and Rare Disease Day champion, for the key roles they have played in the formation of the Parliamentary Friendship Group. You can listen to the speech that Kane delivered at the launch event here.
RVA looks forward to working with the Parliamentary Friendship Group on the issues that impact those living with a rare disease, their families and carers, including WA’s response to the priorities, actions and implementation steps outlined in the National Strategic Action Plan for Rare Diseases.