As Many as One in Ten Americans Suffer from a Rare Disease

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Allsup supports advances in treatment and observes Rare Disease Day February 29.

In the U.S., a rare disease is one that affects fewer than 200,000 people. According to the National Organization on Rare Disorders (NORD), nearly 7,000 rare diseases affect nearly 30 million Americans. Many of these diseases make it impossible for people to continue working, according to Allsup, a nationwide Social Security Disability Insurance (SSDI) representation company.

Allsup helps individuals with rare diseases apply for and obtain their SSDI benefits when they can no longer continue working due to the physical and/or mental effects of their disease. The company joins with organizations and people around the world in acknowledging rare diseases as an important public health issue, and observing World Rare Disease Day on February 29. NORD is the official U.S. sponsor of the global observance with the 2012 theme of “Rare, but strong together.”

The observance, which falls on the last day of February each year, gained momentum earlier this month with the introduction of the “Transforming the Regulatory Environment to Accelerate Access to Treatments” (TREAT) Act. The bill would expedite development and access to safe and effective treatments for patients with serious or life-threatening diseases, including rare diseases.

The proposed legislation is designed to:

  •     Enhance and codify the Federal Drug Administration’s accelerated approval process.
  •     Address concerns of the rare disease community related to conflict of interest provisions.
  •     Provide greater clarity, consistency, and transparency in the review processes.
  •     Encourage innovation and adoption of modern scientific tools in regulatory science.

“It is the patients suffering from these serious and life-threatening diseases that benefit from expedited access to safe and effective innovative therapies,” said U.S. Sen. Kay Hagan, D-N.C., when introducing the bill Feb. 15. “For the 30 million Americans living with rare diseases, new advances in science and medicine cannot come fast enough.”

The same can be said for those waiting for SSDI benefits. According to a 2009 Allsup survey, people with disabilities often experience financial crises, extreme stress and declining health while waiting for a decision on their SSDI applications.

Allsup’s experienced representatives understand the unique challenges individuals with rare diseases face when applying for SSDI. Few rare diseases are in the SSA Listing of Impairments and individuals often have difficulty getting a timely, accurate diagnosis. Many rare diseases still have no approved treatment, and many are not even being studied by medical researchers at this time. As a result, most disability examiners know very little about specific rare diseases. Allsup has helped many individuals with rare diseases overcome these challenges and obtain SSDI benefits after they were initially denied.

Allsup is pleased to be one of more than 500 patient organizations, government entities, research institutions, and companies that have signed on as a Rare Disease Day Partner for 2012.

For more information on rare diseases, visit NORD’s website at For information on the rare diseases and conditions included on the Social Security Administration’s Compassionate Allowance program, visit

NORD is a nonprofit organization representing all Americans affected by rare diseases. It was established by leaders of patient organizations in 1983 and provides advocacy, education, patient assistance programs and research grants to improve the lives of those affected by rare diseases.

Allsup is a nationwide provider of Social Security disability representation and Medicare plan selection services. Founded in 1984, Allsup employs more than 800 professionals who deliver specialized services supporting people with disabilities and seniors so they may lead lives that are as financially secure and as healthy as possible. The company is based in Belleville, Ill., near St. Louis. For more information, visit

Tai Venuti                                    
(800) 854-1418, ext. 68573    

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T.J. Grigone
Allsup, Inc.
(800) 854-1418
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