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An Open Letter to Members of Congress: The Nearly 30 Million Americans With Rare Diseases Desperately Need Health Care Reform!
Date:9/14/2009

WASHINGTON, Sept. 14 /PRNewswire-USNewswire/ -- The following letter was sent today to all members of Congress by the National Organization for Rare Disorders (NORD):

September 14, 2009

Dear Member of Congress:

On behalf of the 30 million Americans who are affected by one of the nearly 7,000 rare disorders, the National Organization for Rare Disorders (NORD) urges you to pass comprehensive health reform legislation to assure that every American has access to affordable, meaningful health insurance coverage. Failure to pass such long-overdue legislation this year would be devastating for people with rare diseases, and for millions of others burdened by chronic illness.

Today, far too many people under the age of 65 with serious medical conditions have inadequate or no access to health insurance. In most areas of the country, in the absence of employer-based coverage, medical underwriting practices by insurers often result in pre-existing condition limits on coverage, higher health insurance premiums and even outright denials of coverage. People with rare diseases customarily incur substantial medical expenses, first in efforts to obtain an accurate diagnosis, and thereafter from hospitalizations, physician office visits, and--for those fortunate enough to have a disease for which there is a treatment--therapies that may cost tens of thousands of dollars per year or more.

NORD and its members, which include approximately 150 patient organizations such as the Moebius Syndrome Foundation, National MPS Society, Prader-Willi Syndrome Association (USA), and VHL (Von Hippel Lindau) Family Alliance, to name a few, believe that for people with rare diseases--and, indeed, for all Americans--four basic principles should be part of any acceptable reform:

  • Health reform must prohibit insurance companies from denying or limiti
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SOURCE National Organization for Rare Disorders (NORD)
Copyright©2009 PR Newswire.
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