New ALS Association Co-Authored Study Projects Dramatic Increase in Prevalence by 2040

Results underscore the urgency of ensuring every person living with ALS has access to specialized care and support as the need continues to grow.

ARLINGTON, Va., Nov. 5, 2025 /PRNewswire/ -- The number of people living with amyotrophic lateral sclerosis (ALS) is expected to rise sharply over the next 15 years, according to a new study co-authored and funded by the ALS Association and published in the Annals of Clinical and Translational Neurology. When taking into account an aging population and improved survival, prevalence of the disease is projected to increase by 25% across multiple countries worldwide by 2040. Advances in ALS treatment would push that number even higher.

Using high-quality registry data from the Piemonte and Valle d'Aosta region of Italy (PARALS) spanning from 2005–2019, the researchers estimated trends in incidence (the number of new people diagnosed each year), survival, and prevalence (the total number of people living with ALS), and then projected those trends forward to 2040.

Based on these projections, prevalence in the United States is expected to rise from 9.68 per 100,000 people in 2024 to 11.21 per 100,000 in 2040. This increase equates to almost 9,000 more people living with ALS nationwide. If a treatment was able to increase survival by even 6 months during this time, the prevalence would jump to 12.01 per 100,000 people.

"These findings suggest that ALS, which is generally classified as a rare disease, will affect an increasingly larger share of the population worldwide in the coming decades, with important implications for health care planning, resource allocation, and research prioritization," said lead author Dr. Rosario Vasta, an assistant professor in the University of Turin's Department of Neuroscience "Rita Levi Montalcini" in Turin, Italy.

The researchers attributed much of the projected increase in prevalence to improvements in survival, although the study was not designed to identify exactly what is helping people with ALS live longer. Co-author Dr. Kuldip Dave, senior vice president of research at the ALS Association, believes advances in ALS care and treatment play a major role.

"More people are gaining access to multidisciplinary care, which we know extends survival and improves quality of life," Dave said. "Greater awareness is also helping people be diagnosed with ALS earlier and begin treatment with appropriate approved therapies as soon as possible, when they are more likely to provide benefit."

In addition to estimating future ALS prevalence for 15 countries, the researchers developed a free online tool (https://preals.als.org) that allows users to explore how changes in survival, incidence, demographics, and other parameters could influence regional prevalence rates.

As the impact of ALS grows, so must the commitment to meet it. Through its strategic plan, the ALS Association is proactively implementing targeted interventions that support people living with ALS today while also building scalable solutions that can meet the needs of an expanding ALS community.

"We are acting now to ensure every person living with ALS has access to affordable care, treatments, and support because the need will just continue to grow," Dr. Dave said. "That's what drives us: making ALS livable for everyone, everywhere—until we cure it."

About the ALS Association  
The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The mission of the ALS Association is to make ALS livable and cure it. For more information about the ALS Association, visit our website at www.als.org. 

About ALS 
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. The disease is always fatal, usually within five years of diagnosis. Few treatment options exist, resulting in a high unmet need for new therapies to address functional deficits and disease progression. 

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SOURCE The ALS Association