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Rare disease and SSDI benefits

Thousands of individuals have been awarded Social Security Disability Insurance (SSDI) for conditions such as cancer, stroke, diabetes, and heart disease. But what if you have a rare disease which is less well-known? Can you still qualify for SSDI benefits? Recently on our disability forum a user asked, “I have a rare disease which afflicts fewer than 200,000 Americans. Unfortunately, it is very serious and I cannot work. Does the SSA have a process to fast track SSDI benefits for claimants like me?” get-filing-disability-help

SSA Listing of Impairments and a Rare Disease

To qualify for SSDI benefits for a rare disease you must meet both medical and nonmedical requirements. Not only must you have the necessary number of work credits to be insured for SSDI, you must also have a severe condition which will last at least 12 continuous months and will not allow you to perform any type of work. If you have a severe disease it may be listed in the SSA Listing of Impairments, which is a listing of the most common conditions and their corresponding symptoms that the SSA recognizes as disabling. But considering that there are close to 7,000 rare diseases and conditions which are recognized by the National Organization for Rare Disorders (NORD), there will be many conditions which are less common which are not included on the listing.

Compassionate Allowance and a Rare Disease

So what if your condition is not on the SSA listing of Impairments? If your condition “meets or exceeds” an existing listing you may be approved for benefits. Additionally, the SSA also has a listing called the Compassionate Allowance list which allows for claimants with certain conditions to have their application fast-tracked. The Compassionate Allowance program has been instrumental for claimants with rare diseases. In fact, the Compassionate Allowance program has eliminated very difficult obstacles and lengthy delays for claimants who have conditions which are rare and which might be difficult to evaluate within the standard disability process.

Is my rare disease on the Compassionate Allowance listing?

Although the SSA updates the Compassionate Allowance listings periodically, there are currently close to ninety conditions on the list. Some of the conditions include (The entire listing can be viewed at

Disability determination for a compassionate allowance condition

If you have a condition on the Compassionate Allowance List you may be able to receive approval for SSDI within a few weeks, versus months or years. Before you are awarded benefits, however, the SSA will also have to request medical records to verify your condition and prognosis and determine if you need a consultative examination.

Will I need a disability lawyer if I have a rare disease?

If your condition is listed on the Compassionate Allowance list you should not need to hire a disability lawyer. In fact, you should immediately be approved for benefits. If your rare disease is not on the SSA Listing of Impairments or the Compassionate Allowance list, however, you may be denied at the initial application level and may need legal help to appeal the denial.

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