NORD Applauds SSA for Expanding "Compassionate Allowances"

Program Helps People with Severely Disabling Rare Diseases

WASHINGTON, July 14, 2011 /PRNewswire-USNewswire/ -- The president of the National Organization for Rare Disorders (NORD) today praised the Social Security Administration's "Compassionate Allowances" program for helping people with severely disabling rare diseases.

"We applaud Commissioner Michael Astrue for having the vision to establish this program.  And we praise his staff for implementing it in a fair, professional and compassionate manner," said Peter L. Saltonstall, NORD president and CEO.

Saltonstall made his comments at a Capitol Hill event at which the addition of 12 new medical diagnoses to the Compassionate Allowances list was announced.  This brings the total number of diseases on the list to 100.

Compassionate Allowances provide expedited review of applications for disability benefits by quickly identifying those that meet Social Security's standards.  This is especially important for people with rare diseases who, historically, have encountered problems when applying for assistance because those making decisions are not familiar with their diseases.

The program was established in 2008 with a list of 50 diseases.  Both initially and as the list was later expanded, patient advocates were given an opportunity to submit diseases for consideration, along with input from medical experts at the National Institutes of Health (NIH) and leading medical centers.

The NORD Medical Advisory Committee—a group of rare disease physicians providing guidance to NORD on medical matters—has submitted input to SSA for this program.  There are approximately 7,000 diseases considered rare in the U.S., and many of these are lifelong and severely disabling.

The majority of the 100 diseases on the Compassionate Allowances list are for rare conditions.  They include, for example, Creutzfeldt-Jakob disease and several devastating rare diseases affecting infants and children.  To read about the program and view the entire list of conditions, go to:  http://www.rarediseases.org/advocacy/initiatives-updates/compassionate-allowances.

SOURCE National Organization for Rare Disorders (NORD)