Written by Christina Jensen on May 11, 2016
Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne and has funded seven research projects that have advanced to human clinical trials, three of which are the… Read More
Written by Jennifer Huron on September 29, 2015
The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on yesterday’s approval of the Ensuring Access to Clinical Trials Act (S. 139) in the United States House of Representatives.
The House of Representatives echoed the U.S. Senate and… Read More
Written by Jennifer Huron on July 17, 2015
A win for the rare disease community
Yesterday, the U.S. Senate passed the Ensuring Access to Clinical Trials Act of 2015 (S 139), which NORD has supported. The bill would make permanent the Improving Access to Clinical Trials Act of 2009 (IACT). Without… Read More