SSDI for rare diseasesUnable to work due to the effects of a rare disease? If your condition prevents employment or substantial gainful activity for a year or longer, you may qualify for Social Security Disability Insurance (SSDI), provided you also meet the Social Security Administration's (SSA) medical criteria and have worked in jobs that pay into Social Security long enough to earn sufficient work credits.

Monthly SSDI payments can help make ends meet. Unfortunately, getting approved for the benefits you so desperately need can be challenging. Here's what you need to know about qualifying for SSDI for a rare disease and how Keefe Disability Law's experienced Boston attorneys can help you navigate the unfamiliar and intimidating application process. 

Rare Diseases and the Blue Book Listing of Impairments 

Living with a condition that few people have or that isn't well-known (or understood) by the public can be isolating. However, when it comes to grappling with a rare disease, you're far from alone. 

Rare diseases – which are defined as illnesses that affect fewer than 200,000 people in the United States – impact an estimated 25 million to 30 million Americans, according to the National Institutes of Health (NIH). Researchers at the National Organization for Rare Disorders (NORD) have identified nearly 7,000 such diseases, some of which are included in the SSA's Blue Book Listing of Impairments. The Blue Book lists qualifying medical conditions, and the criteria applicants must meet in order to be approved for benefits. Meeting a listing in the Blue Book is the surest path to approval.

Understanding Compassionate Allowances 

After submitting an SSDI application, it generally takes between three and five months to get a decision. However, certain conditions, including some rare diseases, may qualify your application for expedited processing through the SSA's Compassionate Allowances program. Qualifying diseases and disorders are considered so severely disabling that the SSA works to process applications and begin payments as soon as possible – often within a matter of weeks. 

The SSA offers Compassionate Allowances for nearly 300 diseases and frequently adds new impairments to the list. In 2021, newly added impairments included the following nine rare diseases: 

  • Duchenne muscular dystrophy
  • Refractory Hodgkin lymphoma
  • Congenital Zika syndrome
  • SCN8A-related epilepsy with encephalopathy
  • Choroid plexus carcinoma
  • Renpenning syndrome
  • SYNGAP1-related NSID
  • Charlevoix Saguenay spastic ataxia (ARSACS)
  • Taybi-Linder syndrome

Qualifying for SSDI When Your Rare Condition Isn't in The Blue Book

Meeting a Blue Book listing may be the most direct route to approval, it isn't the only way to get SSDI benefits. If your rare disease isn't included in the Blue Book – or you don't meet the criteria for that particular impairment – you can try to “equal a listing” by showing that your condition is as disabling as one that qualifies. This involves completing a residual functional capacity (RFC) form, essentially an in-depth assessment of your limitations and the work you can perform despite them. The RFC provides the examiners at Disability Determination Services (DDS) information like how long you can stand or sit, how much you can lift, and how often you require breaks. Have questions about completing an RFC? Talk to our attorneys.

We Provide Knowledgeable and Experienced Disability Representation 

When you're dealing with a rare disease that makes it impossible to hold a job, you need disability benefits as soon as possible. Unfortunately, most SSDI applications are denied in the initial phase of examination – often due to problems in the application paperwork or a lack of supporting medical evidence from acceptable medical sources. Keefe Disability Law's accomplished Boston lawyers can guide you through application completion and help you gather the complex medical evidence needed to prove your impairment.

Schedule a Consultation 

Applying for SSDI? Don't go it alone. Complete our online contact form or call 508-283-5500 (toll-free 888-904-6847) to schedule an appointment for a free initial consultation with a member of our legal team. For more information, request our complimentary book, Unlocking the Mystery: The Essential Guide for Navigating the Social Security Disability Claims Process.


Patrick Hartwig
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Managing Attorney, Keefe Disability Law
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