NSW Labor Declares Motor Neurone Disease Notifiable
The New South Wales government has designated motor neurone disease (MND) as a notifiable condition starting September 1, 2026. This policy requires medical practitioners to report cases to NSW Health to improve data collection, research, and healthcare planning.
Why it matters
This is the first initiative of its kind in Australia, aiming to create a robust evidence base to better understand and treat a rare, progressive neurological disorder.
NSW will become the first jurisdiction in Australia to report cases of people living with motor neurone disease, with the Minns Labor Government making it a notifiable condition from 1 September 2026.
From tomorrow, 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.
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.
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