Melissa Parke (Fremantle, Australian Labor Party, Shadow Assistant Minister for Health) Share this | Hansard source

Today, along with many parliamentary colleagues, I attended the Rare Voices Australia barbecue and, notwithstanding the promises earlier this week by the member for Swan regarding plentiful steaks, hot meat pies and Italian sausages, I am grateful to the organisers for the mini veggie burgers. I am also grateful for this opportunity to briefly discuss a health issue that affects a considerable part of the Australian population but remains relatively unknown.

An estimated 1.2 million Australians are affected by a rare disease, including 400,000 children. Though each condition is rare in itself, the experience of living with such rare afflictions is not uncommon, and indeed something like one in 12 people live with a rare disease, both in Australia and globally.

Rare diseases are any disorders or conditions that are life threatening and/or chronically debilitating while at the same time statistically rare, meaning the condition has an estimated prevalence of five in 10,000. There are between 5,000 to 7,000 known rare diseases, and the severity of these conditions, coupled with the lack of information and the large number of people affected collectively, makes them a distinctive health priority requiring a nationally coordinated plan, something that the UK has introduced, as we heard at the barbecue here today, but which is lacking here in Australia. Building and improving access and the sharing of resources will encourage the development of policies, service planning, clinical guidelines and research, which will in turn improve diagnosis, appropriate care and treatment.

Last Friday, 28 February was international Rare Diseases Day. The theme and focus for 2014 is 'Care', emphasising the significance of medical, social and emotional support for people living with a rare disease. I urge all members to show their support for people impacted by rare diseases.

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