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Tuesday, November 13, 2012

Help NORD Protect Federal Support for Rare Disease Programs

»» ADVOCACY ALERT ««


November 13, 2012



Dear NORD Members and Friends:

You have an opportunity today to do something incredibly important to promote the development of life-saving therapies for people with rare diseases.

Congress has just returned from its post-election recess. Now our nation is in a countdown to devastating budget cuts that will go into effect for NIH, FDA and other government agencies on January 1 if Congress doesn't take action to resolve the budget impasse.

These across-the-board budget cuts of 8.2% would have a major impact on rare disease research funded by NIH and the review of potential new therapies at FDA. They would mean the loss of $2.5 billion from NIH's $30 billion medical research budget. And they could significantly reduce NIH's ability to promote innovation in areas such as translational research to bridge the gap between basic research and treatments for patients.

The cuts would also slice $319 million from FDA's budget and force the agency to undergo major staff reductions, leading to much slower drug reviews and approvals. They would stall implementation of many of the important rare disease provisions in the FDA Safety and Innovation Act that we all worked so hard to get enacted earlier this year.

You can do something to help keep this from happening: In the Legislative Action Center on NORD's website, you'll find a basic letter NORD has prepared that you can personalize with your own information and submit to your members of Congress and the White House.

This letter recognizes that our nation is in a fiscal crisis but presents the case for a balanced approach to deficit reduction that does not include further cuts to "Non-Defense Discretionary (NDD) Programs." These are programs representing the core functions that government provides for the benefit of all, including medical and scientific research, education, public health and more.

NORD has joined more than 80 other organizations in the Coalition for Health Funding to present a broad base of support urging Congress and the White House to reach agreement on a deficit reduction plan before January so that the cuts won't be implemented.

Please join us in this important campaign by submitting a letter to your elected officials today urging them not to let "sequestration" (the across-the-board budget cuts) happen. You can personalize your letter by adding information about the way a rare disease has impacted your family.

NORD will keep you informed as this situation unfolds. And we encourage you to share this campaign with your family and friends. Our nation is in a fiscal crisis, but cutting medical research programs that create jobs and stimulate our economy is not the answer.




María

María de la Torre
Founder and Executive Director

A Public Charity
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