The Muscular Dystrophy Association has released a report in Melbourne estimating the cost of the disease.
More than 30,000 Australians are affected by muscular dystrophy.
There are about 60 different types of the disease, but it most commonly affects young boys who rarely survive into their 20s.
The report reveals the financial burden per sufferer is $126,000 a year.
This figure includes loss of earnings and well being, healthcare and indirect costs, and has prompted calls for more funding to try and find a cure or treatment for the condition.
Executive Director, of the Muscular Dystrophy Association, Boris Struk, says it’s hoped the release of the report will help the disease be recognised as a national health priority.
“It’s a devastating muscle destroying disease affecting about one in one thousand people in our population,” he said.
“There is no treatment, there is no cure, there’s nothing at the moment that can reverse the damage that’s impacted on the individual with muscular dystrophy.”
See more on this story, tonight on ABC News Victoria at 7pm