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National Pediatric Research Network Act is Reintroduced in the Senate

February 28, 2013 by Bill Strong

Today is Rare Disease Day and it is only fitting that the NPRNA was reintroduced in the U.S. Senate this evening. And we are thrilled for what this means for the SMA community and rare diseases. 

In a major step forward for the advancement of clinical research for Spinal Muscular Atrophy (SMA) and other pediatric disorders, the National Pediatric Research Network Act (NPRNA), was reintroduced today in the U.S. Senate. The legislation’s introduction comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming margin.

Introducing the NPRNA on Rare Disease Day on Capitol Hill, Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS) continue their leadership from the 112th Congress by once again serving as the bill’s lead sponsors. Joining them as original cosponsors will be Senators Richard Blumenthal (D-CT), Roy Blunt (R-MO), Susan Collins (R-ME), Rob Portman (R-OH) and Sheldon Whitehouse (D-RI). The NPRNA will now be referred to the Senate Health, Education, Labor and Pensions (HELP) committee, where it is expected to be considered by committee members in the coming weeks. FightSMA and the Gwendolyn Strong Foundation, two of the bills endorsing organizations, are tremendously grateful to Senators Brown and Wicker and all of our supporters in the Senate for their tireless efforts, which give hope to thousands of families across the nation.

As this critical legislation is considered in the Senate, the SMA community needs your help. A phone call, letter or email to your senators can make all the difference. Click HERE to learn how you can help!

Your work during the 112th Congress brought the legislation closer to the president’s desk than it has ever been. With your help, we can push the NPRNA over the finish line!

Thank you so much for all that you do.

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