Marielle Smith (SA, Australian Labor Party) Share this | Link to this | Hansard source

February 28 marked Rare Disease Day. Approximately eight per cent of Australians are currently living with a rare disease. That's about two million Australians. There are some 7,000 rare diseases that we know about. According to the Murdoch Children's Research Institute about 75 per cent of these diseases affect children, too.

Up to one in 12 babies are born with a rare disease. Anyone with a rare disease, or who cares for or loves someone with a rare disease, knows that late diagnosis or inappropriate treatment are too-frequent consequences of how little is known about many of these diseases. Often a family's doctor will be ill equipped to deal with the specifics of a particular rare disease. Rare diseases are often not well understood by workplaces or by schools, leaving those suffering from them without adequate and necessary supports. Structural issues are also significant, including in getting the right support services from government and the NDIS, and often there are not enough established support networks for those who have received a diagnosis.

I want to commend today all those in Australia who are working to support those in our community who are suffering from rare disease, and the people who love them. In particular, I want to acknowledge the incredible advocacy of the Rare Find Foundation, of which I am proud to be patron and which is fighting for children who have Tay-Sachs or Sandhoff diseases, and their families. Those suffering from rare disease in Australia need our support. Too often they feel unseen and overlooked, and this has to change.