This week, National Organization for Rare Disorders, Inc. (NORD) honors Sen.Sherrod Brown and Chairman Fred Upton for their tireless efforts to pass the National Pediatric Research Network Act (NPRNA), legislation championed by FightSMA to authorize NIH to establish a network of pediatric research consortia including multisite clinical trials for rare pediatric diseases. Also honored for their contributions to the fight for an SMA cure will be the Kennedy Family! The relationship established between the Kennedys and Upton during the years-long effort to pass the NPRNA serves as a case study in how constituents can effectively work with their elected officials to get meaningful legislation enacted.
Posted on: Tue, 06 May 2014 21:48:49 +0000