September 30, 2022, Washington, DC – Following the passage of H.R 6833, Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), issued the following statement:
“NORD is pleased that Congress approved a full five-year reauthorization of several critical FDA user fee programs prior to the… Read More
April 8, 2022, Washington, DC – This week, the National Organization for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and… Read More
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
As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at one of the most vulnerable populations in our nation: the rare disease community. The Build Back Better Act, H.R…. Read More
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
