After a decade of advocacy on Capitol Hill, the fight against SMA passed a remarkable legislative milestone this past November with the enactment of the National Pediatric Research Network Act (NPRNA). Once implemented, the NPRNA will support the establishment of pediatric research consortia focused on basic, translational and clinical research, including multi-site clinical trials for [...]>>Read more
Rare Disease Day is an international movement to unite people from all over the world in an effort to bring awareness and advocacy to rare diseases. It is held every year on the last day of February and rallies around “rare disorders without borders.” Events are planned across the globe in over 70 countries to [...]>>Read more
It has been a busy and productive month for FightSMA as we prepare for the implementation of the National Pediatric Research Network Act (NPRNA)!
On Wednesday of this week, FightSMA organized a valuable conversation among stakeholders regarding the best path forward to ensure that SMA is in a strong position as the National Institute of Child [...]
We are thrilled to report that our Senate sponsors have now taken to the Senate floor to highlight the importance of NPRNA to their colleagues and to our nation. Delivering statements for the Congressional Record, Senators Sherrod Brown (D-OH) and Roger Wicker (R-MS) noted that the law will improve the lives of children living with [...]>>Read more
WASHINGTON, D.C. Nov. 27, 2013 — FightSMA is tremendously proud to announce that after years of passionate advocacy by families across the country the United States Senate passed the National Pediatric Research Network Act (NPRNA) Nov. 14 by unanimous consent. The legislation, which the U.S. House approved on Tuesday, Nov.12, was signed today by President [...]>>Read more