From 1 September 2026, motor neurone disease (MND) became a notifiable condition in New South Wales - the first Australian jurisdiction to introduce mandatory reporting of MND. The change is an important step towards building a clearer picture of how many people are living with MND, where cases occur and whether environmental, occupational or other factors may contribute to the disease.
What is motor neurone disease?
MND is a rare, progressive neurological condition that damages the nerve cells responsible for controlling voluntary muscle movement.
Its effects vary from person to person, but MND can progressively affect mobility, speech, swallowing, breathing and a person’s ability to complete everyday activities. There is currently no cure.
The NSW Government estimates that approximately 750 people are living with MND in NSW. At least 300 people in the state are expected to be diagnosed with MND, and a similar number to die from the condition, each year.
What does “notifiable” mean?
From 1 September 2026, medical practitioners are required to notify NSW Health when they diagnose a person with MND.
Although the term “notifiable disease” is often associated with infectious conditions, MND is not contagious. In this case, notification is being introduced to support disease monitoring, research and healthcare planning - not to prevent transmission.
Information reported to NSW Health may include a person’s:
Name, address and date of birth
Age and gender
Aboriginal and Torres Strait Islander status
Country of birth and language spoken at home
Occupation
Date of onset and notification
Date of death, where applicable
Referring doctor’s details
The NSW Government has confirmed that the information collected will be kept confidential.
Do people living with MND need to report their own diagnosis?
No. The responsibility to notify NSW Health sits with the diagnosing medical practitioner.
People living with MND and their families do not need to complete a separate notification themselves. If you have questions or concerns about what information will be reported, you can discuss these with your neurologist or treating doctor.
It is also important to understand that notification does not change a person’s diagnosis, treatment or current care arrangements. It does not automatically alter eligibility for the NDIS, aged care services or other government-funded supports.
Why is this change important?
Approximately 90 per cent of MND cases occur sporadically, without an apparent family link or established cause. Until now, there has been no comprehensive mandatory system for recording MND cases in NSW.
More consistent information may help researchers and health authorities:
Understand the true prevalence and distribution of MND
Identify possible geographic, environmental or occupational patterns
Investigate potential causes and risk factors
Plan healthcare services around areas of need
Improve models of care and service coordination
Direct research funding more effectively
Work towards better treatments, prevention and, ultimately, a cure
As MND NSW has explained, better data can help reveal the true patterns of the disease and support improvements in research, services and models of care.
What does this mean for care providers?
For disability, aged care and home care providers, the change reinforces the importance of responsive, coordinated and person-centred care.
MND can progress quickly, and a person’s care needs may change considerably over a relatively short period. Effective support therefore requires regular communication between the person, their family, neurologist, GP, allied health professionals, specialist MND services and care team.
Care planning may need to adapt as a person’s mobility, communication, nutrition, respiratory function and personal care needs change. Wherever possible, these conversations should take place proactively so that equipment, staffing, clinical support and other services can be arranged before they become urgent.
Becoming notifiable will not solve these challenges immediately. However, stronger statewide data should give health authorities a better basis for planning services and understanding where people with MND and their families need additional support.
Supporting people to live safely and meaningfully at home
At Reliant Healthcare, we recognise that a diagnosis of MND affects not only the individual, but also their family and the people supporting them.
Our approach is centred on the person: their preferences, routines, relationships, independence and changing goals. Depending on individual needs and funding arrangements, support at home may include personal care, assistance with daily activities, nursing care, respite for family carers and coordination with the person’s wider clinical team.
The decision to make MND notifiable is a significant and welcome development. Most importantly, it ensures that people living with MND are counted, and that their experiences can contribute to better research, planning and care in the future.
If you or someone you care for is living with MND and would like to discuss support at home, please contact the Reliant Healthcare team.
