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More Than 100 Rare Disease Patient Organizations and Medical Experts Join NORD in Urging Congress to End the Shutdown

Delays in Vital Medical Research and Development of Therapies Harm Children and Adults with Rare Diseases

Delays in Vital Medical Research and Development of Therapies Harm Children and Adults with Rare Diseases, According to National Organization for Rare Disorders

Washington, DC, Oct. 11, 2013-----In a strongly worded letter to Congressional leaders, the National Organization for Rare Disorders (NORD) today urged that the federal government be re-opened so that vital services such as medical research will not be delayed.

More that 100 rare disease patient organizations and medical experts joined NORD in signing the letter, which was sent to Senate Majority and Minority Leaders Harry Reid and Mitch McConnell and to House Speaker John Boehner and Minority Leader Nancy Pelosi.

"We are outraged that the Congress has permitted the federal government to shut down," NORD states in the letter, noting the importance of research at the National Institutes of Health (NIH) and review of potential new therapies at the Food and Drug Administration (FDA) to rare disease patients and their families.

"When the government shuts down, we all lose confidence in its capacity to do its job," the letter continues.  "The people who invest in the development of new therapies must have confidence that the government is fully and efficiently functioning.  The researchers who are developing new therapies for our diseases need confidence that the guidance provided by government regulators will be knowledgeable and consistent."

"Medical research and FDA's review of potential new therapies are especially important to people with rare diseases," said NORD President and CEO Peter L. Saltonstall.  "Of the nearly 7,000 diseases considered rare in the U.S., only about 450 have FDA-approved treatments."

Most rare diseases are serious and many are life-threatening, he added.  In addition, about 2/3 of the patients with rare diseases are children.  For all of these reasons, Saltonstall said, the government shutdown is especially devastating for the rare disease community.

NORD is a nonprofit organization representing the nearly 30 million Americans who have rare diseases.  Groups signing the letter represent patients and families affected by rare diseases such as Rett syndrome, Marfan syndrome, and Behcet's disease.  Also signing the letter were 37 rare disease medical experts at universities and hospitals across the U.S.

Read the letter >

 
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