Natasha Griggs (Solomon, Country Liberal Party) Share this | Hansard source

I rise to acknowledge the outstanding work of Rare Voices Australia. Today I attended a function, with some other parliamentarians, organised by Rare Voices Australia. This is an organisation that provides support and advocacy services for Australians who suffer from rare diseases and for their families. I am actually a member of one of those families, because my nephew Joshua suffers from the rare Goldenhar syndrome. It means so much for my family, and those of others, that Rare Voices Australia is able to assist people like Joshua—because one in 12 Australians have a rare disease or disorder.

It is so important that we stand up and support those vulnerable members of our community. Professor Barney Glover, the Vice-Chancellor of the Northern Territory's Charles Darwin University, also attended the function and asked me to be an advocate for Rare Voices in the Northern Territory. Professor Glover is an avid advocate for those with rare diseases, because he was also personally touched. Sadly, he lost his grandson Tate to Alpers syndrome. I know he joins with me today as I call on the parliament to continue to support the extraordinary work of Rare Voices Australia and their advocacy for Australians suffering from rare diseases and disorders.

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