NSW will become the first jurisdiction in Australia to make motor neurone disease a notifiable condition, with doctors required to report new cases to NSW Health from September 1, 2026.
The change follows the publication of the Public Health Amendment (Motor Neurone Disease) Order 2026. It means medical practitioners will need to notify NSW Health when a patient is diagnosed with MND, creating a clearer statewide picture of who is living with the disease and where cases are occurring.
The Minns Labor Government says the Australian-first move will give NSW Health a stronger evidence base to understand the impact of MND, plan health services, support future research into possible causes and improve the search for treatment options.
Motor neurone disease affects about eight in every 100,000 Australians. Around 90 per cent of cases occur sporadically, with no clear family link or obvious cause.
MND is a rare, progressive neurological disorder that causes the rapid degeneration of muscle activity. It can affect a person’s ability to walk, speak, breathe and carry out everyday functions. There is currently no cure.
Information collected will include a patient’s name, address, date of birth, age, gender, Aboriginality, language spoken at home, country of birth, occupation or school, date of onset, date of notification and date of death if applicable. Details of the referring doctor will also be recorded. NSW Health says the data will be kept confidential.
The NSW Government has already committed $2 million for MND research through the 2023-24 state budget. That funding includes three research grants aimed at improving health and wellbeing outcomes for people living with MND and advancing diagnostic tools to support earlier detection and referral. The projects are funded until late 2027, with progress reports due later this year.
Acting Premier Prue Car said MND was devastating not only for those diagnosed, but also for the families, friends and communities around them. She said NSW was leading the country with a change that would help properly assess the disease’s impact and better support health services.
Health Minister Ryan Park said the move was a practical step in the fight against MND and something advocates had long called for. He said building a stronger knowledge base could help researchers and clinicians develop preventive measures, better treatments and, one day, a cure.
Minister for Medical Research David Harris said making MND notifiable would give doctors and researchers critical information needed to better understand the disease.
Independent Member for Murray Helen Dalton said she had advocated alongside Professor Dominic Rowe for seven years to make MND notifiable in NSW. She said families in parts of the Riverina had seen alarmingly high rates of MND and had spent years asking why.
MND NSW chief executive Liam O’Meara described the decision as a landmark step for the MND community, saying better data would help reveal the true patterns of the disease and improve models of care, services and research.
Macquarie University Professor of Neurology Dr Dominic Rowe AM estimates about 750 people are currently living with MND in NSW. He said at least 300 people in NSW would be diagnosed with MND this year, and at least 300 would die from it.
Professor Rowe said identifying who has MND is the first step to understanding the cause of sporadic MND. A statewide register, he said, would allow careful research into possible environmental causes and help bring patients closer to recognition, answers and future treatment breakthroughs.
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