The International Alliance of ALS/MND Associations have released insights from the 2023 Global Fundamental Rights Survey.

These rights represent the global ideal for people living with ALS/MND and their caregivers.

Australia contributed 77 out of a worldwide total of 1927 survey responses (60 people living with ALS/MND and 17 current or former caregivers). While this sample was too small for publication, the results still offer useful insights.

  • 78% of Australian respondents reported having access to multidisciplinary care (compared with 43% worldwide).
  • Encouragingly, 78% of Australian respondents also agreed that they have access to the highest quality treatments available within their healthcare system (compared with 44% of the international sample).
  • 97% of Australian respondents reported having access to an MND Association that provides care supports (compared with 64% worldwide).

The results of this survey help identify global gaps in access and provision of fundamental care for people living with MND and provide direction for future research, advocacy and policy projects.

To view a summary comparing the Australian and International survey results, and gain further insights into more specific details such as access to specific disciplines, clinical trials, voice preservation, communication technology and genetic testing, click here.

To access the global analysis, a webinar and associated poster presentations are also available via the Alliance website which you can access here.



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