NORD- letter to Congress to re-open for medical research

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NORD- letter to Congress to re-open for medical research

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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, 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.

READ THE LETTER AND VIEW LIST OF ORGANIZATIONS AND EXPERTS (including OrthostaticTremor.org)

http://rarediseases.org/docs/policy/Sig ... downv3.pdf
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