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Archives for: September 30th, 2022

NORD’s Response to the House Passage of the Build Back Better Act

Written by Rohan Narayanan on November 19, 2021

Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 million Americans living with a rare disease, released the following statement:

“Although NORD is encouraged by many provisions that will help… Read More

NORD Issues Statement on Recently Introduced “Promising Pathway Act”

Written by Valaree DonFrancesco on June 26, 2020

NORD is deeply concerned about the “Promising Pathway Act” recently introduced in both the Senate and the House. Contrary to the stated goal of giving patients with serious and life-threatening diseases a “chance at receiving meaningful treatments,” this legislation, by its own terms, would lower FDA’s approval standards, exposing patients… Read More