Steve Irons (Swan, Liberal Party) Share this | Hansard source

I rise to talk about a recent family conference for the Tuberous Sclerosis Society, which follows on the Rare Voices barbecue that the member for Solomon talked about. I actually represented the member for Hinkler at that particular forum, which was held at the Gateway Comfort Inn, which is run by his son. His grandchild also suffers from tuberous sclerosis.

For other members in this place: tuberous sclerosis is a group of two genetic disorders that affect the skin, the brain and nervous system, the kidneys and the heart and can cause tumours to grow. The diseases are named after a tuber- or root-shaped growth in the brain. Tuberous sclerosis is inherited. Mutations in two genes, TSC1 and TSC2, are responsible for most cases of this condition. Only one parent needs to pass on the mutation for the child to get the disease; however, most cases are due to new mutations, so there is usually no family history of tuberous sclerosis.

The items on the federal agenda that will benefit families living with tuberous sclerosis are the National Disability Insurance Scheme, the listing of medicines on the Pharmaceutical Benefits Scheme, overall health funding and the future of rare diseases in health policy in Australia—which I am sure all members in this place will take on board, considering the barbecue today by Rare Voices Australia to raise awareness of rare diseases in the Australian community.

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