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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

Advocacy Alert: Tell Congress to Act Now and Pass FDA User Fee Agreements

Written by Jennifer Huron on April 5, 2017

Lawmakers are currently considering legislation to reauthorize FDA user fees. The FDA largely relies on user fees to operate and review innovative drugs, biologics, and devices.  Not only does this legislation provide critical funding for FDA to quickly review products, but the user fee agreements also provide patients and… Read More

Building on Policy Momentum

Written by Paul Melmeyer on February 3, 2014

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