300 Section - A Quality of Life Assessment of the 2025 Fundamental Rights of People Living with Amyotrophic Lateral Sclerosis (ALS)/Motor Neurone Disease (MND) Worldwide

A guiding document for the Alliance is the Fundamental Rights of People Living with ALS/MND that states aspirational rights of the global community. Originally conceived in the 1990s as the “Baseline of Services for People Living with ALS/MND” these rights are updated annually by the Alliance’s PALS and CALS Advisory Council.  

Every two years, the Alliance launches a global survey to gain insights about the perceptions and experiences from people living with ALS/MND (PALS), their caregivers (CALS), and their blood relatives. These results inform us about trends and gaps with regards to the fundamental rights, the availability and use of genetics services, data for advocacy efforts, and opportunities for broader collaboration. 


Design:

The survey is run by Bramm Research, an independent third party, and launched via our member organizations and on social media from September 2-December 8, 2025. The survey is available in 15 languages. 

The goal is 3,000 responses this year, up from 2,000 in 2023 (from 54 countries). 


Results:

Data from the 2021 and 2023 surveys have provided significant insights into the ALS/MND experience worldwide: 

-50% of PALS respondents agree they have the best quality of life possible;  

-50% believe they have access to the highest quality of care, and 42% have access to a multidisciplinary clinic; 

-81% of PALS respondents have been economically impacted by the disease; 

-Over 50% of PALS respondents have experienced discrimination. 


Conclusion: There are clear correlations between elements of the Fundamental Rights and quality of life. In 2023, we know that access to care, information and education, treatments, and choice (of treatments, health support workers, and location where care takes place) have been the most significant drivers for influencing quality of life. The 2025 survey results will allow for longitudinal analysis of the Fundamental Rights to optimize function and quality of life.