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Archives for: August 3rd, 2017

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

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

President Signs 21st Century Cures Medical Innovation Bill Into Law

Written by Jennifer Huron on December 13, 2016

president-signs-21st-cent-curesToday, 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:

Senate Passes Landmark 21st Century Cures Act

Written by Jennifer Huron on December 7, 2016

Senate Passes Landmark 21st Century Cures Act

us-senateWashington, 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

House to Vote on New Version of 21st Century Cures Act Tomorrow

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

FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model

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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