NORD Announces Ten New Rare Disease Registries, Thanks to Multi-Year Grant from Shire
Written by Laura Mullen on September 11, 2018
Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.
NORD’s IAMRARETM Registry Program provides a web-based tool… Read More
Debra Miller: 2016 Rare Impact Awards Honoree
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
NORD Issues Statement Applauding the Approval of Ensuring Access to Clinical Trials Act
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
Ensuring Access to Clinical Trials Act of 2015 Passes in the U.S. Senate
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
The Will to Live and the Strength for a Cure
Written by Lisa Sencen on August 18, 2014
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his… Read More