Creating Australia’s first MND Care Guideline 

Health guidelines play an important role in shaping the quality of healthcare in Australia. They aim to promote best practice and ensure everyone has the same standard of healthcare, regardless of where they live. 

Today, more than 2,000 Australians live with motor neurone disease (MND). However, the absence of national care guidelines means the standard of care for those living with MND can vary widely between urban and regional communities and even between states. This disparity can leave patients and their families navigating a fragmented and inequitable healthcare system.  

To help address this, FightMND has invested $2 million into the University of Adelaide’s Australian MND Guideline Development Project. Led by Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit Director, Professor Zachary Munn, this two-year initiative will help address key gaps in MND care. It will also support the creation of the Australian MND Guideline, Australia’s first evidence-based, nationally consistent guideline for MND care. 

Best-practice care is crucial for improving quality of life and managing symptoms in the absence of a cure. The Australian MND Guideline will offer standardised, evidence-based recommendations, supporting healthcare professionals, individuals living with MND, carers and policymakers. The project represents a significant step towards ensuring consistent, high-quality care for all Australians affected by the disease. 

Central to the development of the Guideline is the Guideline Development Panel. Composed of clinicians, researchers and people with lived experience of MND, the panel will provide vital insight and play a pivotal role in crafting the recommendations. Co-chaired by Professor Steve Vucic of Concord Hospital and Jo Whitehouse of MND Victoria, the panel will ensure the guideline is practical, implementable and responsive to the needs of the MND community. 

Work on the Australian MND Guideline will start in May 2025 and is due for completion in 2027. For more information about the Project, visit the Australian MND Guideline Development Project website.  

Help FightMND support those living with MND 

Motor neurone disease (MND) touches lives in profound and often devastating ways, affecting not only individuals but their families, caregivers and communities. At FightMND, we are committed to standing with those impacted by this disease by funding care research projects that make a difference, like the Australian MND Guideline Development Project. 

By focusing on care-centred research, we complement the work of state MND associations and organisations nationwide dedicated to improving the quality of life for MND patients.  

However, this fight needs more than just research. It needs your support. Your generosity helps us:  

  • Fund essential care-focused research that drives the development of better MND care practices  
  • Improve the accessibility and quality of care for MND patients across the country  
  • Raise awareness of MND and its widespread impact on families  With your help, we can continue to push for progress and fight to defeat the Beast of MND.