On 1 September 2026, motor neurone disease officially became a notifiable disease in NSW, making it the very first jurisdiction in Australia to report cases of people living with MND. But what does this mean for people living with MND, their carers, families and communities? And how will the process work?
Making MND a notifiable disease is a move welcomed by many in the MND Community, and follows lengthy advocacy for the initiative. By collecting more detailed and current information about MND diagnoses across the state, better data will be available to inform planning and funding for improvements in services and support, and to guide research for better treatment and care for MND.
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.
If you’re a person living with MND, you won’t need to gather information or report your condition.
MND is classified as a routine notification, and it will be the responsibility of your medical practitioners and/or hospital chief executives to notify their Public Health Unit (PHU) within 24 hours of your diagnosis.
The data collected as part of the notification process will be kept confidential, and will include your:
- Name
- Address
- Date of birth
- Age
- Gender
- Aboriginality
- Language spoken at home
- Country of birth
- Occupation/school
- Date of onset
- Date of notification, and if applicable, date of death
The notification will also include details about your referring doctor.
MND NSW CEO Liam O’Meara said MND becoming a notifiable disease ‘is a significant milestone that will help us better understand the prevalence and impact of MND, strengthen research, improve healthcare planning, and ensure support can be directed where it is needed most’.
“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,” he said.
“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.”
Member for Murray, Helen Dalton, said that ‘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,” she said.
“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.”
