How common is ALS?

Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, damages the nerve cells that control muscle movement. When examining how common ALS is, the National ALS Registry projects that approximately 34,720 adults in the United States are living with ALS in 2026. The Centers for Disease Control and Prevention (CDC) also estimates that about 5,000 Americans are diagnosed each year.

Prevalence describes how many people currently live with ALS, whereas incidence describes new cases diagnosed during a set period. These figures frequently evolve as researchers improve their methods for identifying and estimating cases.

How many people are living with ALS?

The National ALS Registry projects that approximately 34,720 adults in the U.S. live with ALS in 2026. This total represents a modeled estimate rather than an exact count of every person affected.

For comparison, a Registry study using 2018 data identified 21,655 people with ALS. After researchers estimated the number of cases that records may have missed, the total rose to 29,824. This difference illustrates why ALS prevalence figures should be evaluated alongside their specific data year and counting method.

How many are diagnosed with ALS each year?

The CDC estimates that about 5,000 people in the U.S. receive an ALS diagnosis each year. Because this remains a general estimate, actual numbers vary annually.

A National ALS Registry study covering 2012-2019 reported an overall annual incidence of 1.44 new cases per 100,000 people in the U.S. These statistics illustrate how many people get ALS each year across a broad population, though they cannot determine whether a particular individual will develop the condition.

What is incidence vs. prevalence?

ALS incidence refers to how many people receive a new diagnosis over a given period, usually a year. ALS prevalence measures how many people have ALS at a given time, regardless of when they were diagnosed.

The table below shows how these two measures differ:

Is ALS considered a rare disease?

Health agencies classify ALS as a rare disease. In the U.S., federal guidelines define a rare disease as one that affects fewer than 200,000 people, a threshold that ALS falls well below. This definition refers specifically to the total number of people living with a condition rather than annual new diagnoses.

Who is more commonly diagnosed with ALS?

ALS can affect anyone, but diagnoses occur more commonly within certain age groups and populations.

Age patterns

ALS becomes more common with age, occurring most frequently in people between 55 and 75. Although the condition can develop in younger adults, the risk generally increases with age.

Differences by sex

ALS affects men slightly more often than women, though this gap narrows among older adults.

Race, ethnicity, and geographic patterns

In the U.S., ALS is diagnosed most often among white people, followed by Black and Asian populations. Diagnoses are also more commonly reported among non-Hispanic than Hispanic people.

Why do ALS estimates differ between sources?

ALS can be difficult to count because doctors are not required to report every case to the CDC. Consequently, some patients remain uncounted in research databases.

Estimates also vary when studies focus on different years, locations, or populations. Researchers may publish recorded counts, adjust figures for uncounted individuals, or project future totals.

For example, the Registry’s 2018 analysis reported both an identified case count and a higher estimate accounting for missed cases. Evaluating any statistical comparison requires reviewing the population, data year, and methodology behind the numbers.

Are ALS cases becoming more common?

The number of people living with ALS may grow in the coming years. This is in part because the population worldwide is growing, and more people are living longer, reaching the ages when ALS is more likely to develop. Researchers estimate global cases could reach nearly 377,000 by 2040.

How does National ALS Registry estimate numbers?

The National ALS Registry combines information from federal healthcare databases and voluntary user registrations, including records from Medicare, Medicaid, and Veterans Affairs.

Because these sources cannot capture every individual, researchers apply a statistical method known as capture-recapture. This statistical approach helps estimate how many cases may be missing from the available records.

The Registry publishes estimates for specific data years, along with separate projections for future years. Because processing healthcare data is time-consuming, newly published reports frequently cover earlier calendar years.

What do these statistics mean for an individual?

ALS statistics help paint a broader picture, but they cannot predict whether an individual will develop the condition. Instead, these figures empower researchers and healthcare systems to organize clinical care more effectively, allocate resources, and support affected families.