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Compassionate Allowances

The Social Security Administration is responsible for two different programs to assist individuals with a disability, both established by law under the Social Security Act:

  • Supplemental Security Income
  • Social Security Disability Insurance

Both programs consult a listing of impairments that have sufficient medical evidence to qualify as disabling.  In other words, these impairments are severe enough to prohibit substantial gainful activity for a duration of no less than 12 months.

A subset of these impairments are ‘compassionate allowances’ made for conditions known to be chronically disabling that can be verified with minimal medical information.  These conditions, like most rare diseases, are often systemic, have no indicated treatment, and are genetic in nature.

The rare disease community remains hopeful that the compassionate allowances program will be expanded to include every rare disease that prohibits substantial gainful activity.  NORD will continue to support those hopes and work with our allies until this goal is accomplished. View the SSA’s Compassionate Allowance Program web page.

On July 14, Social Security Commissioner Michael Astrue announced the addition of 12 new conditions to the Compassionate Allowances list.  Individuals were invited to join the Commissioner at the Dirksen Senate Office Building in Washington, DC to celebrate the new additions to the list.

On October 13, at the U.S. Conference on Rare Diseases and Orphan Products, sponsored by NORD and DIA, Commissioner Astrue announced that 13 additional conditions, all of which are rare, have just been added to the list of Compassionate Allowances.

View the Compassionate Allowances 101 power point.

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Social Security Commissioner Michael Astrue and NORD President and CEO Peter L. Saltonstall at an event on Capitol Hill July 14, 2011, to celebrate reaching the milestone of 100 medical diagnoses on the Compassionate Allowances list.

 
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