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NORD Commends Expansion of SSA’s “Compassionate Allowances” List

January 15, 2014 - People with rare diseases often experience devastating financial challenges, NORD president says.

People with Rare Diseases Often Experience Devastating Financial Challenges, NORD President Says

Washington DC, January 15, 2014----Peter L. Saltonstall, president and CEO of the National Organization for Rare Disorders (NORD), today praised the Social Security Administration’s announcement that 25 additional medical diagnoses would be added to SSA’s Compassionate Allowances initiative.

That initiative provides expedited review of applications for disability assistance from individuals diagnosed with certain medical conditions so disabling that they invariably would meet SSA’s requirements.

“Individuals and families affected by rare diseases often live within the shadow of financial ruin while also coping with devastating medical issues,” Saltonstall said. “The Compassionate Allowances initiative is extremely important to our members, and we are grateful to SSA for its continued support and expansion of this program.”

Today’s announcement was made during a meeting with NORD representatives and other patient advocates to discuss a new Disability Awareness Campaign being launched by the Social Security Administration.  The 25 diagnoses added to the list include several rare diseases.

NORD and other patient advocacy organizations have provided input to SSA for the Compassionate Allowances initiative.  The initiative was originally announced at a NORD conference.

Launched in 2008 with a list of 50 diseases and conditions, the program is aimed at identifying medical diagnoses that clearly meet the statutory standard for disability.  When individuals with those diagnoses apply for disability assistance, they receive fast-track review so that they are notified of the final decision within days.

The 25 new diagnoses bring the total number of diseases on the list to 225. The entire list, with the new conditions in red, may be viewed on the SSA website.

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