Rare Disease Funding In Australia

Rare Disease Funding In Australia

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Welcome to Australia, a country with a world class medical system, however there is one flaw to Australias Medicare and Private Health Insurance, Australia has little to no recognition of rare diseases in Australia, here what this means is those who are born or develop rare or unknown diseases, Australia has little to no funding for this minority group. Parents of the minority have to turn to Private Health Insurance which can do little help in some cases.

This can be solved if rare diseases become more wildly known in Australia and Australian Parliament, we need more acts more laws to fund and nurture this minority group who face what rare disease they have, Australia needs to recognise these people and help give these people the best quality of life through better funding and laws that recognise them.

I am starting this Petition as i am inspired by my little sister Sarah Claire Innes, Sarah was born on 28th of November 2008 with a rare genetic condition called Pancreatic Agenesis, well this is only a rounded name for her disease, Sarah was born prematurely only at 31 weeks and weighed 735 grams at birth, doctors told my mother she would only live for a few weeks, then they realised one major problem with her, she had no pancreas nor a gallbladder. Here Sarah was able to get treatment, however doctors were still confounded on what exactly Sarah had, now yes Sarah has type one diabetes, and yes type one diabetes gets funding, but this is not Sarahs official diagnosis, Pancreatic Agenesis is her official diagnosis, my mother has to pay around 10,000 dollars a year for medical supplies due to the reason that Sarah gets little government funding because of her rare genetic disease and how it is not recognised by Australian Government. Sarah not only has no pancreas or a gallbladder, she also has major heart problems and a failing liver. Im calling for help, I'm calling for kids and adults who have rare diseases to be more funded and recognised by the Australian Government. Please sign this petition and help make a change.

Jessica Innes

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