Sadly, the National Pediatric Research Network Act (S.3461 / H.R. 6163) did not pass in the 112th Congress.
With that news, we are SO thankful to know that on January 14th, 2013 Congresswomen Lois Capps (CA) re-introduced the National Pediatric Research Network Act (H.R.225) in the United States House of Representatives. This bipartisan legislation will create a national network focused on accelerating clinical trials for pediatric rare diseases, including SMA.
We are so hopeful it will pass in this 113th Congress!!
Track it with us!
The Library of Congress: http://thomas.loc.gov/cgi-bin/bdquery/z?d113:HR00225:@@@X