Today Congresswoman Lois Capps (CA-24) re-introduced the National Pediatric Research Network Act (H.R.225) with her Republican colleague Congresswoman Cathy McMorris Rodgers (WA-5). They were joined by a bipartisan group of four colleagues.
The National Pediatric Research Network Act (NPRNA), which passed the House unopposed in 2012, would authorize the National Institutes of Health (NIH) to facilitate the creation of pediatric research consortia focused on pediatric diseases, such as spinal muscular atrophy (SMA). The bipartisan bill was designed to help increase research and accelerate the development of clinical trials to treat rare pediatric diseases.
Too many children--and their families--suffer from diseases that have no cures or even treatments. And despite the great research that has been done to help these children, there is much more we must do to strengthen our pediatric research agenda. That is why I am pleased to re-introduce The National Pediatric Research Network Act with my friend, Congresswoman McMorris Rodgers," said Congresswoman Lois Capps. "This bill would go a long way to increasing, coordinating, and improving research on children's illnesses--especially rare and complex diseases--and developing new treatments to fight them. Every parent's worst fear is that their child becomes sick, and we owe it to every parent in America to do what we can to fight childhood illnesses."
As a mother, I am reminded on a daily basis of the importance of our children's health -- and for that reason, I am proud to join with my friend, Congresswoman Lois Capps, to re-introduce the National Pediatric Research Network Act -- so we can build upon our nation's commitment to pediatric medical research," said Congresswoman McMorris Rodgers. "Too often, research into pediatric disorders has lagged behind research into other medical conditions. The time has come to take pediatric research to the next level, and this bill will do just that. It will give new hope to millions of children -- and their families -- in this country."
As parents of a 5-year-old little girl battling spinal muscular atrophy (SMA), the leading genetic killer of young children, we're unbelievably grateful to our very own Congresswoman Lois Capps for her steadfast support of rare pediatric diseases. Research of complex and debilitating diseases, such as SMA, is extremely mature with many programs headed to human clinical trials in the near future. The timing of the re-introduction of the NPRNA couldn't be more critical and its impact could potentially be game changing for children suffering from diseases like SMA," said Bill Strong, Co-founder, Gwendolyn Strong Foundation.
In the 112th Congress, the National Pediatric Research Network Act passed the House of Representatives twice. It was first passed unanimously as a standalone piece of legislation and then again when it was joined with the Prematurity Research Expansion and Education for Mothers Who Deliver Infants Early (PREEMIE) Act, but the House and Senate were unable to come to an agreement on a final bill.