Washington, D.C. – Rep. Cathy McMorris Rodgers (R-WA) and Rep. Lois Capps (D-CA), members of the House Health Subcommittee, applauded the Subcommittee’s passage of their bill, HR 6163, the National Pediatric Research Network Act (NPRNA), today.  The NPRNA would advance research for a variety of rare pediatric disorders such as Down syndrome and spinal muscular atrophy (SMA).

 

“As the mom of a child with special needs, I know that research on pediatric diseases has often lagged behind research on other medical conditions,” said Rep. McMorris Rodgers.  “For example, while children represent 20 percent of the U.S. population, the National Institutes of Health (NIH) uses only 5 percent of its extramural funds on pediatric research. The time has come to take pediatric research to the next level, and the best way to do that is to enhance collaboration and the sharing of knowledge among medical researchers.  Our bill will incentivize this positive approach by creating a research consortia focused on pediatric diseases, giving new hope to the millions who suffer from them and their families.  I look forward to continuing to work with Rep. Capps, our Subcommittee colleagues, and the disabilities community to get this bill passed through Congress and signed into law.”

 

“I’m very pleased that legislation I’ve co-authored with my colleague Congresswoman Cathy McMorris Rodgers has been approved by the Health Subcommittee and is advancing in the legislative process,” said Rep. Capps.  “Today’s markup is a great example of how we can work together to advance public health.  The bipartisan National Pediatric Research Network Act would go a long way to increasing 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 all parents to do what we can to fight childhood illnesses.”

 

The NPRNA would authorize NIH to establish up to 20 pediatric research consortia throughout the nation.  A portion of the consortia would focus on rare and genetic diseases, such as SMA, muscular dystrophy, Down syndrome, and Fragile X, which are often difficult to study because of their infrequent occurrence in the population.

 

The NPRNA is supported by the Children’s Hospital Association, the Federation of Pediatric Organizations, Parent Project Muscular Dystrophy, the National Down Syndrome Society, Fight SMA, and other groups.  The bill now moves to the full Energy and Commerce Committee. 

 

Rep. McMorris Rodgers is Co-Chair of the Congressional Disabilities Caucus.  To learn more about her work on disabilities, click here.