How Many People in the US Have ALS: What the New Data Actually Shows

Counting people with Amyotrophic Lateral Sclerosis (ALS) is surprisingly tricky. You’d think in 2026 we’d have a live ticker for every diagnosis in the country, but that is just not how the medical system works. Instead, we rely on a mix of insurance claims, self-reporting, and complex math.

Honestly, the numbers are higher than most people realize.

Current estimates from the Centers for Disease Control and Prevention (CDC) and the National ALS Registry suggest that roughly 30,000 to 33,000 people in the U.S. are living with ALS right now. If you want to get technical, the prevalence is hovering around 10 to 11 cases for every 100,000 people.

It’s a rare disease. But it's becoming less "rare" every year.

Why the numbers are climbing (It’s not just better testing)

For a long time, the standard "fact" you’d see in pamphlets was that 20,000 Americans had ALS. That number is outdated. It’s basically old news. Recent studies, including a major 2025 report from the CDC, show a steady upward crawl.

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Why? One word: Age.

ALS hits hardest between the ages of 55 and 75. Since the U.S. population is getting older—thanks, Baby Boomers—the raw number of people in the "danger zone" for a diagnosis is larger than ever before. In fact, experts predict that by 2030, we’ll see over 36,000 cases nationwide. That is a 10% jump in just a few years.

The "Capture-Recapture" Problem

The CDC doesn't just wait for doctors to call them. They use a method called capture-recapture. They look at Medicare data, Veterans Affairs records, and the National ALS Registry. Then they use statistical models to estimate how many people they missed.

Because here is the cold truth: some people never make it into the official count. They might be misdiagnosed with something else for years, or they might lack the insurance that leaves a paper trail for researchers to find.

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Who is actually getting diagnosed?

When we look at how many people in the us have als, the demographics aren't evenly split. It’s a bit of a mystery, but the data consistently points to certain groups being at higher risk.

• Gender: Men are about 1.5 times more likely to develop ALS than women. However, as people get older (specifically past age 70), that gap starts to close.
• Race: The disease is most prevalent among Caucasians. Researchers are still trying to figure out if this is a genetic reality or if it’s a "diagnosis gap" where minority communities have less access to the specialists needed to confirm ALS.
• Military Service: This is one of the most sobering stats. Veterans—regardless of whether they served in peace or war—are nearly twice as likely to be diagnosed with ALS compared to the general public.

The 90-Minute Rule

You might have heard the phrase "every 90 minutes." It’s a common refrain from the ALS Association. Basically, every hour and a half, someone in the U.S. is diagnosed, and every hour and a half, someone passes away from the disease.

This creates a "revolving door" effect in the statistics. Because the average life expectancy after diagnosis is still only two to five years, the total number of people living with the disease at any one time (prevalence) stays relatively low, even though the number of new cases (incidence) is significant.

What most people get wrong about the "Cure"

We aren't at a cure yet. But the reason the prevalence numbers are going up isn't just because more people are getting sick—it’s because people are living longer.

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Newer treatments like Qalsody (for the SOD1 genetic variant) and better management of breathing through non-invasive ventilation are stretching those two-to-five-year estimates. We are slowly moving toward making ALS a "livable" disease rather than an immediate death sentence.

In states like Michigan, they’ve actually made ALS a mandatory reportable condition as of 2025. This is huge. It means researchers don't have to guess anymore; they get real-time data. More states are expected to follow suit, which will likely "increase" the official numbers simply because we're finally looking in the right places.

Practical steps if you're looking for answers

If you or someone you know is part of these statistics, the "how many" matters less than the "what now."

1. Get to a Certified Center: Don't just see a general neurologist. Go to an ALS Association Certified Treatment Center of Excellence. The multidisciplinary care there is proven to extend life.
2. Join the Registry: If you are living with ALS, sign up for the National ALS Registry at the CDC website. It’s the only way researchers can track environmental triggers like heavy metals or pesticides.
3. Genetic Testing: Even if no one else in your family has it, get tested. About 10% of cases are genetic, and new "gene-silencing" therapies only work if you know your specific mutation.

The numbers are rising, but so is the visibility. We are finally moving past the era of "the disease nobody knows" into an era where 33,000 people have a very loud voice in Washington.

Next Step: You can look up the nearest ALS clinic through the ALS Association’s national map to ensure you’re getting the most current standard of care.