Can You Get SSDI for a Rare Disease?

Getting SSDI for a Rare Disease

Living with a rare disease can feel isolating. You may spend months—or years—just trying to get the right diagnosis. And when that rare condition makes it impossible to work, you might wonder whether Social Security Disability Insurance (SSDI) is even an option. The good news is: yes, you can get SSDI for a rare disease.

But as with many parts of the SSDI system, the approval process isn’t always easy. Here’s what you need to know to improve your chances.

What Counts as a Rare Disease?

In the U.S., a rare disease is generally defined as any condition that affects fewer than 200,000 people. There are over 7,000 rare diseases, including conditions like:

• Ehlers-Danlos Syndrome (EDS)
• Myasthenia Gravis
• Multiple System Atrophy (MSA)
• Idiopathic Pulmonary Fibrosis (IPF)
• Stiff Person Syndrome
• Primary Immunodeficiency Disorders
• Wilson’s Disease
• Rare cancers and genetic syndromes
• And more.

These conditions vary widely, but they often come with serious symptoms, like chronic pain, fatigue, mobility issues, neurological problems, and other debilitating impacts. Many rare diseases are progressive and disabling—even if they’re not widely understood.

The SSA and Rare Conditions: What’s the Challenge?

The Social Security Administration (SSA) uses a guide called the Blue Book to evaluate disability claims. It lists many common qualifying conditions—but most rare diseases aren’t included by name.

That doesn’t mean you can’t qualify. It just means you’ll need to show that your condition is equal in severity to a listed impairment. The SSA doesn’t approve claims based on diagnosis alone—they care about how your condition affects your ability to work.

What You’ll Need to Prove

To get SSDI for a rare disease, your application will have to clearly show:

• Your condition is severe and medically documented.
• It’s expected to last at least 12 months or result in death.
• It prevents you from doing any full-time work, not just your old job.

The more detailed your medical records are, the better. You’ll want to include:

• Specialist evaluations and a confirmed diagnosis.
• Lab tests, imaging, or genetic testing, if available.
• A treatment history, including any hospitalizations or surgeries.
• Functional limitations, like trouble standing, lifting, concentrating, or using your hands.
• Statements from your doctors explaining why you’re unable to work.

Compassionate Allowances for Certain Rare Diseases

The SSA has a special program called Compassionate Allowances, which speeds up approvals for people with certain severe conditions—including some rare diseases. If your diagnosis is on the list, you may be approved in a matter of weeks instead of months. Examples include:

• ALS
• Some rare cancers
• Batten Disease
• Hutchinson-Gilford Progeria Syndrome
• Certain childhood-onset genetic disorders

You don’t need to apply separately for this program. The SSA screens applications automatically. Still, having a well-documented file can help trigger faster review.

Why Rare Disease Claims Often Get Denied

Even with a serious condition, rare disease claims are frequently denied at first. This may be because:

• SSA reviewers aren’t familiar with the condition.
• The medical evidence is limited or hard to interpret.
• The impact on your daily functioning isn’t clearly explained.
• Your doctor’s notes don’t connect your symptoms to work limitations.

But a denial isn’t the end of the road—it’s just the beginning of the appeals process, where many people are eventually approved.

How an SSDI Lawyer Can Help

When you’re dealing with a rare disease, the last thing you need is more stress. An experienced SSDI lawyer can help by:

• Gathering and organizing medical evidence
• Working with your doctors to provide the right documentation
• Framing your case in terms the SSA understands
• Filing appeals and representing you in hearings, if needed

We know how to take a complex, unfamiliar diagnosis and make it clear why you qualify for benefits.

Why Choose Us?

As a Memphis SSDI lawyer, I’ve helped clients with rare and misunderstood conditions get the support they need. I know how frustrating it can be when no one seems to understand your illness—and I’m here to make sure your case gets the attention it deserves.

If you’ve been diagnosed with a rare disease and can’t work, contact us today for a free consultation or fill out the form below. Let’s talk about your options and how we can help you get the benefits you deserve.