MND Victoria state election platform asks to make MND notifiable and invest in care 

MND Victoria has revealed a 2026 state election platform made up of four key asks that will improve health outcomes for all Victorians living with motor neurone disease (MND).  

Over 600 Victorians are currently diagnosed with MND, with the majority experiencing barriers to accessing specialist healthcare, support, and services suitable for their rapidly changing needs.  

One of the key asks, to make MND a notifiable disease in Victoria, seeks to bring the state in line with a recent policy change in New South Wales. Classifying MND as a notifiable disease will require the diagnosing doctor to record information about a patient, including age, occupation, a location of residence, which helps researchers to build knowledge on the prevalence and causes of MND.  

Mary-Jane Stolp, CEO of MND Victoria said, “MND Victoria’s election priorities reflect the needs of people living with MND across the entirety of Victoria. This devastating disease does not discriminate, and nor should our systems of care. We want to see equitable access to care across people of all ages and locations.   

“New South Wales has led the nation on making MND notifiable, which will provide much needed data for research into the disease, but for the best results we need to see this data collected across state lines. Thanks to the great Neale Daniher, Victoria has a special relationship with MND research, so we should be doing all we can to contribute by making it notifiable here too.”  

The organisation is asking all parties and candidates to:  

1. Enable all Victorians living with MND to have equitable access to vital assistive technology, by funding MND Victoria’s Equipment Loan Service  
   
   55% of Victorians living with MND are reliant on the aged care system, where delays and funding gaps restrict access to essential equipment. MND Victoria’s existing in-house service addresses this gap, and government funding would enable the organisation to keep this service free for those in need of vital support.   
2. Make MND a notifiable disease in Victoria  
   
   As of 1 September 2026, MND is a notifiable disease in NSW. Replication of this policy by the Victorian government will help address critical data gaps, enabling researchers to investigate potential contributors, risk factors and patterns of MND. 
3. Establish a new regional multidisciplinary neuro-palliative MND clinic in North-East Victoria  
   
   MND clinics provide best-practice care, yet Victoria’s existing MND clinics are concentrated in Melbourne and Barwon, leaving many regional Victorians with limited access to specialist MND services. Investing in regional MND care will support earlier intervention, better coordination of care and improved quality of life, while reducing pressure on acute health services.     
4. Expand access to specialised genetic counselling for informed decision-making  
   
   Around 20% of people living with MND carry a gene variant linked to the disease, including many with no known family history. Specialist genetic counselling enables people to make informed decisions about genetic testing, understand the implications of results and consider future care options—including accessing treatment and research opportunities.