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Congress passes pediatric research bill

Posted by: James Walsh Updated: November 15, 2013 - 3:56 PM

In the wake of our recent project looking at medical devices going into younger patients, I thought this was worth sharing.

NORD Salutes Congress for Passing Pediatric Research Bill!

The National Organization for Rare Disorders (NORD) congratulates the U.S. Congress for passing a bill to promote medical research on pediatric diseases and, in particular, on rare diseases affecting children.

The bill, which was strongly supported by NORD and its more than 200 member organizations, was introduced in Congress by Representative Lois Capps (CA) and Senator Sherrod Brown (OH).  It was approved earlier in the House of Representatives and this week in the Senate.

Called the National Pediatric Research Network Act, the bill will now go to President Obama for his signature.  It is designed to ensure that investment by the National Institutes of Health (NIH) in pediatric research optimizes resources through enhanced partnerships and data-sharing among research institutions.

"NORD applauds Representative Capps and Senator Brown for their leadership and the entire U.S. Congress for addressing this very important issue," said NORD President and CEO Peter L. Saltonstall.  "In the rare disease community, we see many children and families affected by devastating diseases for which there are no treatments.  Optimizing and encouraging research on pediatric diseases is of critical importance to NORD and our members."

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