Written by Lisa Phelps on August 3, 2017
Washington, D.C., August 3, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of the Food and Drug Administration Reauthorization Act of 2017:
“Today the Senate joined the House in… Read More
Written by Jennifer Huron on December 13, 2016
Today, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients, including:
Written by Jennifer Huron on December 7, 2016
Senate Passes Landmark 21st Century Cures Act
Washington, D.C., December 7, 2016—Today, the United States Senate overwhelmingly approved the 21st Century Cures Act, a game-changer for medical innovation, by a bipartisan vote of 94-5. The President is expected to… Read More
Written by Jennifer Huron on November 29, 2016
We are excited to announce that U.S. lawmakers have finally reached an agreement on the 21st Century Cures Act, a game-changer for patients with rare diseases. This agreement comes more than one year after the House passed its original version of the bill. The first vote is expected to take place… Read More
Written by Mary Dunkle on January 12, 2016
When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on just 20 groups of diseases. However, FDA has now provided a pathway for extending the model to many other diseases.
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