NFAWA continues to be part of the national conversation through the Neurological Alliance Australia (NAA), working alongside other neurological and neuromuscular organisations to ensure the needs of people living with neurological conditions are recognised nationally.

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National survey highlights the need for better care.

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The NAA has released the findings of its inaugural Neuro Service Gaps and Innovation Survey, which gathered the experiences of 3,805 Australians living with neurological conditions, carers and other stakeholders.

 

The survey found that:

• 51% experienced difficulty accessing neurological care.

• 30% waited more than four years for a diagnosis.

• 48% delayed or skipped healthcare because of cost.

• Only 39% described their care as coordinated.

• Just 9% felt fully supported by their healthcare team.

 

These findings highlight the importance of timely diagnosis, coordinated care, affordable services and better support for people and families living with neurological conditions.

 

For the NF community, the survey provides valuable national evidence that can help strengthen advocacy for rare neurological conditions such as Neurofibromatosis, including the need for better access to specialists, coordinated care, research and support services.

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2026 Neurological Summit

The survey findings were launched at the 2026 Neurological Summit at Parliament House in Canberra. The NAA is calling for a National Action Plan for Neurological Conditions, supported by state and territory plans, to address the gaps identified through the survey.

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NFAWA will continue to share relevant national developments and advocate for the needs of Western Australians living with NF.