NORD

The first half of 2016 has already been a very busy year for the Food and Drug Administration as it finalized and published its new comprehensive set of tobacco deeming regulations, continued its implementation of a new food safety system in compliance with the Food Safety Modernization Act, and released a new set of pain medication guidelines related to opioid addiction and abuse. All of these developments have come under newly appointed FDA commissioner Robert Califf, M.D. His top priorities also include strengthening FDA’s workforce, improving medical product safety, and supporting the President’s National Cancer Moonshot Initiative and the Precision Medicine Initiative. Dr. Califf will...
Today, February 29, 2016, is not only a special day because it's leap day, but also because it is Rare Disease Day . Taking place on the last day of February every year, Rare Disease Day is a chance for the rare disease community to come together and raise awareness to the public and to policymakers about rare diseases and their effects on people’s lives around the world. This campaign brings together over 80 countries worldwide in the effort to find cures and advocate for more research and development, and is sponsored by the National Organization for Rare Disorders (NORD) , as well as the European Organization for Rare Disorders (EURODIS). This year's theme is “Patient Voice,” identifying...
Guest blog post by the National Organization for Rare Disorders. February 28 is Rare Disease Day ’€“ a time to show support for the 30 million Americans, and millions more around the world, living with rare diseases. Only a few hundred of the nearly 7,000 rare diseases have approved therapies. Many are not being studied at all by medical researchers. Often, patients ’€“ or parents of patients ’€“ feel that nothing will be done unless they raise the money, recruit the researchers and fuel the search for their own lifesaving treatment. They find themselves in a race against time, since rare diseases tend to be serious and many are life-threatening. To promote awareness of these and other rare...

Sidebar Quote

You can change the image of things to come. But you can’t do it sitting on your hands … The science community should reach out to Congress and build bridges.
The Honorable John E. Porter