Washington, DC — The National Organization for Rare Disorders (NORD) applauds efforts of Congressional leaders to protect the Orphan Drug Act (ODA) and ensure proper incentives are in place to continue to foster robust rare disease drug development. Last week, leaders of the House Energy and Commerce Committee… Read More
April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who passed away over the weekend.
“Over his many years in Congress, Senator Hatch demonstrated his commitment to… 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
