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Archives for: September 6th, 2018

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

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