Motor neurone disease becomes a notifiable condition

NSW will become the first jurisdiction in Australia to report cases of people living with motor neurone disease (MND), with the NSW Government making it a notifiable condition from 1 September 2026.

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.

MND was thrust into the spotlight with the revelation that lauded South Sydney Rabbitoh Jai Arrow had been struck by the disease.

The raw emotion and tidal wave of community empathy have ignited many people’s interest in the lethal condition.

“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,” said Minister for Health Ryan Park.

“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.”

Minister Park said the mandatory notification of MND diagnoses was a practical step that advocates had been crying out for

“This is a practical step we are taking in the fight against motor neurone disease,” said MinisterPark.

“Our hope is that by monitoring the disease, we might be able to understand it better.”

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.

“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,” Minister Park said.

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 NSW 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.