As of September 1, 2026, NSW will become the first jurisdiction in Australia to report cases of people living with motor neurone disease (MND), with the State Government recognising it as a notifiable condition.
From here, medical practitioners will be required to notify NSW Health of MND cases, following the publication of the Public Health Amendment (MND) Order 2026.
This is an Australian-first initiative, and is said to provide NSW Health with a “stronger evidence base to better understand motor neurone disease” and “may assist with the future planning of healthcare services and funding for research into its potential causes, and possible future treatment options.
Within Australia, MND affects approximately eight in everyone 100,000. 90 percent of these cases appear sporadically, without any apparent reason or family link.
MND is a rare, progressive neurological disorder that causes rapid degeneration of muscle activity, and can impair walking, talking, breathing and general function. As of yet, there is no known cure for the disease.
Acting NSW Premier, Prue Car, says MND can be a devastating condition not only for those who are diagnosed with it, but for the family, friends and community who surround them.
“NSW is leading the country with a change that gives us the chance to properly assess the impact of this disease and use that knowledge to better support our healthcare services,” she says.
“This is about building better understanding today so we can work towards treatment options, and a step closer to a future with a potential cure.”
By law, a notifiable disease is a medical condition that must be reported to NSW Health by medical practitioners, hospitals, laboratories and schools or childcare facilities, to help prevent and control the spread of certain diseases.
Data collected will include the patient’s full name, address, date of birth, age, gender, Aboriginality, language spoken at home, country of birth, occupation/school, date of onset, date of notification and date of death if applicable. It will also include details about the referring doctor.
All data collected will kept confidential.
Minister for Health, Ryan Park, says the move to make MND a notifiable disease serves as a “practical step” to better fight the disease.
“Our hope is that by monitoring the disease, we might be able to understand it better,” he says.
“There is a reason people call motor neurone disease the beast – it is unrelenting and unforgiving, and it slowly takes away a lot of what people hold dear.
“We hope that by building this knowledge base, our incredible medical researchers and clinicians can do what they do best and develop preventive measures, better treatments, and maybe even a cure.
“We saw what former Australian of the Year, Neale Daniher, did in his remarkable life to fight against motor neurone disease, and we’re seeing what Jai Arrow is doing to combat it now – hopefully this small change can bring us one step closer to eliminating this awful disease.”
In NSW alone, it is estimated that 750 residents live with the condition. In 2026, approximately 300 people will be diagnosed with MND, and at least 300 will die from it.
Professor of Neurology at the Macquarie University, Dr Dominic Rowe AM, says identifying who has MND is the first step to understanding the 90 percent of cases which have no known cause.
“[The register] will enable careful research into the environmental causes of MND, without which we will never understand the mechanisms involved,” he says.
“All people with MND want to be recognised. They want to be counted. They demand to be studied so that the cause of their disease is understood.
Independent Member for Murray, Helen Dalton, has been advocating alongside Professor Rowe for seven years, and says the announcement is a huge breakthrough.
“We cannot begin to find the cause if we do not have the data,” she says.
“This is a major global win but it is not the finish line.
The NSW Government has committed two million dollars in funding for MND research as part of the 2023 to 2024 NSW Budget.
This budget included awarding three research grants to help improve the wellbeing and health outcomes for people living with the disease, and drive advancements in diagnostic tools to improve rates of early detection and referral.
MND NSW CEO, Liam O’Meara, says the research is a “landmark” step forward for the community.
“Minister Park deserves real credit for mandating this change and ensuring it didn’t get bogged down in lengthy parliamentary process,” he says.
“It reflects years of determined advocacy from people like Professor Dominic Rowe, MP Helen Dalton, people with lived experience, their families and the wider MND community who fought to give MND the recognition and authority needed to drive meaningful reform.
“Better data will help reveal the true patterns of MND, giving us the insight needed to provide better models of care, improve services, strengthen research and ultimately drive progress toward prevention and a cure.”
Progress reports will be released later this year, and funding will occur until late 2027.
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