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Advocacy Alert: August 14, 2012

When Congress returns from its summer recess on September 10, you'll be receiving an invitation from NORD to join us in letting Congress know this is not acceptable.

Dear NORD Members and Friends,

We are writing to alert you to a situation that could have a major impact on rare disease programs at NIH, FDA, and other federal agencies.  Under the Budget Control Act of 2011, federal programs face an across-the-board funding cut of nearly 8 percent in January 2013 if Congress hasn't reached agreement on a budget deficit reduction plan.

These across-the-board cuts could have a devastating effect on research and other programs of major importance to the rare disease community.  When Congress returns from its summer recess on September 10, you'll be receiving an invitation from NORD to join us in letting Congress know this is not acceptable.

In the meantime, we wanted to share with you a report issued recently by Senator Tom Harkin, Chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies.  The Harkin report details projected state-by-state impacts these automatic spending cuts, known as "sequestration", would have.

Senator Harkin's report discusses the potential impact on NIH and specific NIH initiatives such as the National Center for Advancing Translational Sciences.  It doesn't mention FDA, but the potential impact on that agency would be equally devastating and could include:

  • substantial cuts in the Orphan Product Research Grants program
  • significantly slower review times for new drugs, biologics and medical devices
  • reductions in planned new staffing for the rare disease offices in CDER and CBER

As soon as Congress is back in session, NORD will be in touch to let you know how you can join us in opposing these across-the-board cuts.  In the meantime, we wanted to alert you to this situation and to share the Harkin report with you.  You may also be interested in reading a blog on this topic by Margaret Anderson of FasterCures, one of our advocacy partners, and a report compiled by another of our partners, Research!America.

Watch for additional information from NORD in early September, as we prepare to make our voices heard on this developing issue.

 
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