NSW will become the first jurisdiction in Australia to report cases of people living with motor neurone disease, with the Minns Labor Government making it a notifiable condition from 1 September 2026.
From tomorrow, medical practitioners will be required to notify NSW Health of motor neurone disease cases, following the publication of the Public Health Amendment (Motor Neurone Disease) Order 2026.
This Australian-first initiative will 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.
Motor neurone disease affects approximately eight in every 100,000 Australians, and 90 per cent of cases occur sporadically, without any apparent reason or family link.
It is a rare, progressive neurological disorder that causes rapid degeneration of muscle activity and can impair walking, talking, breathing and general functioning. There is no cure for the disease.
A notifiable disease is a medical condition that by law 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 case'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. The data collected will be kept confidential.
The Minns Labor Government committed $2 million funding for motor neurone disease research as part of the 2023-24 NSW Budget. This 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.
These research projects are funded until late 2027, with progress reports due later this year.
Quotes attributable to Acting Premier of New South Wales Prue Car:
"Motor Neurone Disease is devastating not only for those diagnosed, but for the family, friends and communities 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.
"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."
Quotes attributable to Minister for Health Ryan Park:
"This is a practical step we are taking in the fight against motor neurone disease, and something advocates have been crying out for. Our hope is that by monitoring the disease, we might be able to understand it better.
"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."
Quotes attributable to Minister for Medical Research David Harris:
"Motor Neurone Disease destroys lives and we don't know its cause or its cure so it's vital we use every means possible to better understand it to one day beat it.
"This Australian-first move to make it a notifiable condition will give our world class medical researchers and doctors critical knowledge to develop better ways to prevent and treat this terrible disease.
"Building an evidence base builds on Minns Labor Government funding of research grants to help improve health and wellbeing outcomes of people living with MND."
Quotes attributable to Independent Member for Murray Helen Dalton:
"I have been advocating alongside Professor Dominic Rowe for seven years to make MND notifiable in NSW and to finally see it happen is a huge breakthrough.
"For families in my electorate, this is deeply personal. We have seen alarmingly high rates of MND in parts of the Riverina and for years we have been asking the same question: why?
"We cannot begin to find the cause if we do not have the data. From tomorrow, for the first time, we can start building a clear picture of who is living with this cruel disease and where they are.
"This is a major global win but it is not the finish line.
"We need to make sure every person living with MND is captured so researchers have the information they need to investigate possible causes, improve treatments and, ultimately, help find a cure."
Quotes attributable to MND NSW CEO Liam O'Meara:
"The NSW Governments decision to make MND a notifiable disease is a landmark step forward for our community.
"Minister Park deserves real credit for mandating this change and ensuring it didn't get bogged down in lengthy parliamentary process.
"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."
Quotes attributable to Professor of Neurology, Macquarie University Dr Dominic Rowe AM:
"It is estimated that 750 people are currently living with MND in NSW. This year, at least 300 people in NSW will be diagnosed with MND, and at least 300 people will die from MND.
"Without understanding the cause, the ability to slow and stop MND remains a pipe dream, and people will continue to die rapidly.
"Identifying who has MND is the first step to understanding the cause of sporadic MND. The register will enable this. It will enable careful research into the environmental causes of MND, without which we will never understand the mechanisms involved.
"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."
