When Small Details Equal Giant Victories

Superficial Siderosis Granted Compassionate Allowance Status

The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was officially recognized by the U.S. Social Security Administration. On August 20, 2018, the U.S. Department of Social Security released a press release outlining their expansion of the compassionate allowance list of severe and incapacitating diseases that qualify U.S. residents fast-tracking SSI and SSDI decisions.

The Compassionate Allowance Program

The Social Security Compassionate Allowance program was designed to identify dangerous medical conditions that have been proven to result in incapacitating disabilities. The Compassionate Allowances program automatically pulls claims where a disease or condition meets the disability standard. The severity and life-altering aspects of these conditions allow a persons claim to gain approval based on the medical confirmation of the diagnosis alone.

 “For nearly a decade, the Compassionate Allowance list has helped us identify and fast-track cases where individuals have diseases that are most likely to be approved for disability benefits,” said Acting Commissioner Berryhill. “Social Security is committed to ensuring Americans with qualifying disabilities quickly receive the benefits they need.”

Superficial Siderosis now joins the list of over 233 severely debilitating diseases such as Cancer, Amyotrophic lateral sclerosis (Lou Gehrig’s Disease), Alzheimer’s, Heart failure and other recognized conditions.

Superficial Siderosis patients who are residents of the U.S. may now have their claim fast-tracked with the approval of their disability claim in as little as ten days, with medical information which proves their diagnosis. The updated list may be viewed here: Compassionate Allowance List

Medical information required for Superficial Siderosis CAL status is:

  • Clinical history and examination that describes the diagnostic features of the impairment.
  • Results of MRI/CT scan of the brain surface, spinal cord, or cranial nerves.

Our Friends Around The World

While this is fantastic news for members of our community in the U.S. it still might help those of you living in other countries. The hope is you may be able to use this official recognition of the severity of Superficial siderosis as evidence in making your own claim.

Where should I apply?

DI 23022.337 Superficial Siderosis of the Central Nervous System

Superficial Siderosis patients who are residents of the U.S. may apply for SSI or SSDI online at


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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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