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 >
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program. read more >
Posted at December 1, 2013 8:09 pm by Paul Melmeyer
Over the past year, Congress has taken several actions (or inactions) that seemingly nobody wanted; indiscriminately slashing budgets as part of the Sequester and shutting down the government for 16 days. read more >
Despite the current focus on logistical problems associated with the rollout of the Affordable Care Act, we must not forget that this law includes some important insurance reforms that were desperately needed, such as: read more >