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RDCRN Conditions Approved for Social Security Compassionate Allowance

January 11, 2012

On October 14, 2011, The Social Security Administration (SSA) approved 13 new rare diseases for Compassionate Allowance (CAL):

  1. Angelman Syndrome*
  2. Corticobasal Degeneration
  3. Lewy Body Dementia
  4. Lowe Syndrome*
  5. Malignant Multiple Sclerosis
  6. Multicentric Castleman Disease
  7. Multiple System Atrophy*
  8. Paraneoplastic Pemphigus
  9. Primary Central Nervous System Lymphoma
  10. Primary Effusion Lymphoma
  11. Progressive Supranuclear Palsy
  12. Pulmonary Kaposi Sarcoma
  13. The ALS/Parkinsonism Dementia Complex

*Disease studied by RDCRN Consortia.

According to the SSA website, Social Security has an obligation to provide benefits quickly to applicants whose medical conditions meet disability standards.

Compassionate Allowances (CAL) provide a way of quickly identifying diseases and other medical conditions that qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target individuals for allowances based on objective medical information that can be obtained quickly about their condition.

The list of CAL conditions is developed through the efforts of a counsel of medical and scientific experts, researchers at the National Institutes of Health (NIH), public feedback during outreach hearings, and comments received from the Social Security and Disability Determination Service communities.

Commissioner Michael J. Astrue has held Compassionate Allowances public outreach hearings on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer's disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.

These disorders became an active part of SSA's Compassionate Allowance on December 10, 2011, at which point Social Security plans to begin accepting applications.

More information on Compassionate Allowances can be found at http://www.ssa.gov/compassionateallowances/

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