Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

Yesterday I had the privilege of hosting the inaugural Rare Disease Barbecue in support of Rare Voices Australia. Rare Voices Australia is an organisation that plays a really significant role in our community. It provides a voice for those Australians who are struggling to cope with the pressures of living with a rare disease without proper care and coordination. Because a disease is rare, people suffering from those diseases just do not have the same voice as people who have a more high-profile disease.

World Rare Disease Day was on 28 February. I think it is a day that we should all put aside and remember each year. There are an estimated 70 million people globally who have a rare genetic disorder. In Australia, Rare Voices is supporting two million Australians who are living with a rare disease. That is something like 10 per cent of the Australian population that is directly affected by one or more of the 8,000 rare diseases. Four hundred thousand of those people who have these rare diseases are children. I feel that it is really important that we recognise the significant impact that rare diseases have in our communities and on those people who are living with a rare disease and then on their families and carers who are involved in their lives.

In addition to that, with these confronting statistics, the value of organisations like Rare Voices Australia is really obvious, because they are advocating on behalf of our constituents to see that our constituents have a fair go. Their aim is to give a unified voice to all those Australians out there who are struggling with a disease where there may be only 28 people in Australia, or even fewer, who are living with that disease.

Yesterday, I met with groups that told me their story and told me the stories of people that they were looking after. There are so many different types of cystic fibrosis. That is a fairly rare disease, but when you get into the subgroups it is even rarer. There are blood diseases. There is Pompe disease. I had a young guy doing work experience in my office who had Prader-Willi syndrome. The associated problems that come with living with these rare disorders are not recognised.

People faced with these rare diseases have challenges each and every day, but we have to make sure that they have opportunity and some sort of hope for the future. We need to recognise that we, as members of parliament, need to look at ways we can help. Yesterday, issues such as a register of rare diseases and putting in place a rare-disease plan were mentioned. I think that those are things that, as a parliament, we need to look at.

Megan Fookes, who is from Rare Voices Australia, spoke to us and gave us a lot of information. We also heard from Conor Murphy, who has a form of muscular dystrophy and who works in Melissa Parke's office two days a week. He gave a wonderful address to tell us about his life and how Rare Voices Australia has helped him. We also heard from a carer and from Tracy Dudding, who is a clinical geneticist and who works in the Hunter. (Time expired)

See this speech in context