NORD wants your Social Security Administration stories

The National Organization for Rare Disorders (NORD) reports that the Social Security Administration (SSA) is seeking input from both physicians and patients on rare diseases. The SSA conducted hearings last December as part of an effort to better understand rare diseases so that patients will encounter fewer delays and frustrations when they apply for Social Security disability assistance. Because many rare diseases are not on the SSA's approved list of diseases, the severity of their impact may be underestimated. As a result, applicants often are initially turned down but later approved. Many people go through unnecessary delay, frustration, and expense in seeking to have an initial decision revisited.

To address this problem, the SSA is asking physicians who treat patients with rare diseases for input on diagnostic criteria for rare diseases, functional impairment, and criteria for determining when patients are functionally disabled. These are primarily medical issues, and NORD will be distributing a survey to medical professionals. Physicians can also read the SSA's questions on the NORD Web site.

NORD is also interested in stories of individual experiences that help identify problem areas within the current system. Have you had difficulty with an SSA disability application? If you, a loved one, or someone you know has such a story to share, please feel free to contact Diane Dorman in NORD's Washington Office at ssa@rarediseases.org.

Photo: U.S. Fish and Wildlife Service