Rare diseases include conditions that affect fewer than 1 in 200,000 individuals in the United States. Despite their rarity, these diseases result in significant disability. The National Institutes of Health estimate that up to 30 million Americans have one of 7,000 different rare diseases.
Learn about the process of qualifying for Social Security disability insurance if you have a rare disease that prevents you from working.
Compassionate Allowances program
The Social Security Administration created the Compassionate Allowances program to streamline the benefits process for individuals who have conditions that cause severe disability. Many of the more than 200 diseases on the Compassionate Allowances list are rare diseases. When you submit your application for SSDI for a disease on the list, the SSA immediately targets your application for a fast benefits decision. If you have a terminal illness, you may also qualify for expedited benefits approval.
Applying with an unlisted disorder
The SSA maintains a guide called the Blue Book containing SSDI approval criteria for thousands of different conditions. However, you may receive an application denial if you have a disease that is so rare it does not appear in this reference. In this case, you must apply for an SSDI medical vocational allowance.
With this process, you must provide medical records and evidence to show that your disease prevents you from earning an independent living. Work history, medical bills, test results and other documents can help support your SSDI application.
You can also attempt to prove that your disease is just as severe as a similar condition that is listed in the Blue Book. In that case, you can use the criteria for the listed condition as a guideline for the evidence you include in your own application.
After receiving a rare disease diagnosis, keep track of your medical records and employment abilities carefully. Even if you can currently work with your condition, you will have the documents you need to apply for SSDI if you eventually become disabled.
