Roderick Brown's three young sons all have the potentially fatal rheumatic heart disease, with his eldest son undergoing open heart surgery at the age of seven.

Key points: Rheumatic heart disease is caused by repeated exposure to an infection on the skin and throat

Rheumatic heart disease is caused by repeated exposure to an infection on the skin and throat It is entirely preventable, but is believed to kill up to 100 Indigenous children and young people a year

It is entirely preventable, but is believed to kill up to 100 Indigenous children and young people a year Maningrida children have the highest known rates of rheumatic heart disease in the world

His story reflects the dire situation facing many Indigenous communities not only in the Northern Territory, but all around Australia.

The father of three and his partner, Danielle Turner, travelled more than 4,000 kilometres from Maningrida with their sons to have their voices heard in Canberra.

"It's important because [we're] sending a message across Arnhem Land and of course, around Australia," he said.

"It's very important that [people know] rheumatic heart disease is very preventable, and can cause death and is very painful for the family."

The family joined doctors, researchers and community representatives calling on the Federal Government to take urgent action to stem the soaring number of cases in Australia.

The causes can be as common as repeated throat and skin infections but the consequences can be devastating, leading to permanent heart damage and even death.

Roderick Brown and his sons Trey and Curtis. ( ABC News )

Maningrida has world's highest recorded rate of RHD

Mr Brown, an Indigenous ranger in Maningrida, said all three of his boys — aged three, seven and nine — get monthly penicillin injections to stop the progression of the disease.

"Just to keep their heart going and active," he said.

His eldest son Curtis underwent life-saving open heart surgery at Royal Melbourne Children's Hospital two years ago.

"My heart was melting when I saw my kid going through the surgery, and after the surgery when he came back it was very sad," Mr Brown said.

"I couldn't stop thinking of that day… Seeing him lying there on a trolley."

Unfortunately, the Brown family's story is not unique.

"My brothers, my niece and nephew, they're going through the same problem," Mr Brown said.

Researchers recently found Maningrida has the highest ever recorded rate of rheumatic heart disease in the world, with one in 20 children having the entirely preventable condition.

Maningrida woman Danielle Turner and her son Devon, who suffers from rheumatic heart disease. ( ABC News )

'Politicians can no longer turn a blind eye'

"We don't want to see children suffering and dying unnecessarily in a rich country like Australia," Dr Bo Remenyi said.

The NT Australian of the Year said the event in Canberra was a "landmark" occasion, and a step towards raising awareness in Federal Parliament.

"I think the message was heard very clearly, to the point where politicians can no longer turn a blind eye to rheumatic heart disease," Dr Remenyi said.

The Australian Government is committed to being a global leader in ending RHD, in accordance with a resolution passed by the World Health Assembly in April, Indigenous Health Minister Ken Wyatt said.

But Dr Remenyi disputed that.

"We're yet to see full a commitment to address the United Nations resolution on rheumatic heart disease," she said.

Earlier this month, the Federal Government committed $3.7 million over three years to five Aboriginal medical services across Australia.

"It's a good initiative to get things off the ground," Dr Remenyi said.

"It's insufficient funding to solve rheumatic heart disease, and of course, there's many communities who missed out on funding all together."

The Brown family with Dr Bo Remenyi travelled from Maningrida to Canberra. ( Supplied: Josh Francis )

Mr Wyatt said the development of a "road map" would allow the funding to be reviewed in the future, and states and territories would also commit money.

For any such initiative to be successful, it had to be community-driven, said Matthew Ryan, mayor of the West Arnhem Regional Council.

"We need to address the issue at the parliament and the politicians need to understand how serious it is," Mr Ryan said.

"It needs to be community-driven, and the Government working with us in terms of funding — direct funding — and the NT Government working with us instead of talk, talk."

For Mr Brown, more help for his family and the community can't come soon enough.

"I'd like to ask Territory Housing, it would be better if myself, my partner and my kids had our own house," he said.

"Better education for the whole community" was required, he said, as well as more doctors in the community.