NORD recently sent a letter to US Department of Health and Human Services Secretary Kathleen Sebelius expressing NORD’s support for patient assistance programs for people enrolled in qualified health plans through health insurance exchanges. read more >
Stephen C. Groft, PharmD, the Director of the NIH Office of Rare Diseases Research since its inception, will retire effective February 8. NORD honored Dr. Groft at our 30th anniversary celebration in May 2013. We reprint here the text from our gala program book. read more >
Posted at February 3, 2014 7:18 pm by Paul Melmeyer
The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. read more >
The announcement by Congressman Henry A. Waxman that he will not seek re-election after this term has reminded all of us at NORD — and throughout the rare disease community — of how very much we honor and respect the numerous contributions of this brilliant and caring public official over his 40 years in office. read more >
Posted at January 22, 2014 7:11 pm by Leleah Robinson
Leleah Robinson, NORD’s Special Assistant to the Vice President of Public Policy, recently attended the FDA public workshops. This blog provides her insight into that event.
In July 2012, President Obama signed into law the Food and Drug Administration Safety and Innovation Act (FDASIA) which requires the FDA to hold at least one public meeting to “encourage and accelerate the development of new therapies for pediatric rare diseases”. read more >