Two Indigenous people are dying each week of an entirely preventable heart disease.

When most people pick up the Strep A bacteria, it's a simple case of being treated by antibiotics.

Rheumatic heart disease starts from a sore throat, which can be passed easily from one person to the next, much like a respiratory infection.

It is brought on from the body's immune system in its attempt to fight streptoccal infection known commonly as strep throat.

If left untreated strep throat infection can lead to having acute rheumatic fever, causing irreversible damage to heart valves.

Aboriginal leaders and other advocates recently gathered at Parliament House in Canberra to discuss the stark reality of First Nations people living with rhuematic heart disease and the roadmap to eliminate it.

Noongar woman Vicki Wade from the Heart Foundation said the disease was causing devastation across First Nations communities.

"It's destroying lives through ongoing and painful injections, surgeries for children as young as five, unnecessary deaths and the huge impact all this is having on our communities," Ms Wade said.

Rheumatic heart disease is considered a Third World disease and yet First Nations children living in remote and regional communities have some of the highest rates of the disease globally.

Two Aboriginal and Torres Strait Islander people die from the disease each week.

The bacteria is easily shared in poor living conditions including household crowding, bed sharing and limited access to washing and hygiene facilities.

Research by the Telethon Kids Institute found that in Australia, First Nations people live with the two conditions at rates 60 times higher than non-Indigenous people.

For those who are living with the disease it requires ongoing medical care including monthly penicillin injections, for 10 years or until the patient has turned 21 years of age and can undergo possible cardiac surgery.

Alec Doomadgee, a Waanyi, Garawa and Gangalidda man, said it was important to look for practical solutions that would make a real difference on the ground.

"We must find ways to improve our living conditions, and ways for people in our community to purchase the things they need on a weekly basis that will make a difference," Mr Domadgee said.

"White goods, quality food and cleaning products, access to a laundromat, those sorts of things, and a way to overcome the prohibitive costs that we face, simply because we are living remotely."

Jonathan Carapetis from the Telethon Kids Institute said the focus was on finding evidence-based strategies to prevent cases of the disease.

"We need to put it into action, we need it to be done with Aboriginal leadership, and we also need the resourcing that is required to tackle the fundamental problems," he said.