Social Security Administration / Rare Diseases / SSI

[del_bug]

 

http://www.rarediseases.org/washington/office#ssa

 

The Social Security Administration (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. Currently, individuals with rare diseases often receive initial denials that later are reversed. The result is unnecessary expense and delay. To address this problem, SSA is asking physicians who treat patients with rare diseases to help establish criteria for these diseases. Three questions are posted on the NORD Web site (www.rarediseases.org). Physicians may submit their responses to [e-mail].

Now the SSA has asked for input on questions related to 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.

In the meantime, to assist the SSA in sorting out these issues, we are also interested in stories of individual experiences that help identify problem areas within the current system. If you, a loved one, or a patient have such a story to share, please feel free to contact Diane Dorman in NORD's Washington Office at [e-mail].