New South Wales has become the first jurisdiction in Australia to make Motor Neurone Disease (MND) a notifiable condition, marking a significant milestone for people living with MND, their families, researchers and healthcare providers. From 1 September 2026, medical practitioners are required to notify NSW Health of newly identified MND cases, following the introduction of the Public Health Amendment (Motor Neurone Disease) Order 2026.
The change is designed to provide a stronger evidence base about the prevalence and impact of MND across the state. By collecting more accurate and comprehensive data, NSW will be better placed to understand the disease, plan future healthcare services and support ongoing research into its causes and potential treatments.
Information collected will include demographic details and key dates relating to diagnosis and disease progression, while remaining confidential. The Order also highlights that people diagnosed with MND are eligible to join the registry, either independently or through their MND clinic.
MND affects approximately eight in every 100,000 Australians and is a progressive neurological condition that causes the degeneration of muscle activity. The disease can affect a person’s ability to walk, talk, breathe and general functioning. Currently, there is no cure.
We spoke to Liam O’Meara, CEO Motor Neurone Disease NSW about this announcement:
“MND NSW welcomes the decision to make Motor Neurone Disease a notifiable disease in NSW. This important change will provide more accurate data on the number of people living with MND, helping to inform research, service planning and future care delivery. Better information leads to better support, and ultimately better outcomes for people living with MND and their families. We look forward to working with our health and palliative care partners to ensure this milestone translates into meaningful improvements in care across the state.”
Professor of Neurology, Macquarie University Dr Dominic Rowe AM, further commented:
“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.”
The change represents more than a regulatory amendment. With more reliable data available, policymakers, clinicians, researchers and community organisations will be better equipped to respond to the challenges of this devastating disease and improve outcomes for those affected.
For more information, please click on the following link to access the Health NSW media release:
Further Context: Understanding Why Better MND Data Matters
The importance of collecting more comprehensive data on Motor Neurone Disease has been underscored by recent research identifying a significantly higher incidence of the disease in parts of regional New South Wales.
A 2025 study led by Macquarie University found that rates of MND in the Western NSW Local Health District were up to seven times higher than expected in some communities. The research drew on cross-referenced data from multiple clinical and health service sources across the district, highlighting the value of accurate, coordinated data collection in identifying potential disease clusters and informing future research.
The introduction of mandatory MND notifications in NSW will help create a more complete picture of the disease across the state, enabling researchers and health services to better understand patterns of occurrence, investigate potential environmental and demographic factors, and plan services to meet future needs.
For more information on the Western NSW MND cluster study, read the article “Seven times higher: Motor neurone disease cluster discovered in western NSW”