NORD and other patient organizations urge Congressional leadership to include the PASTEUR Act in the end-of-year package
Published: Nov 16, 2022
Tagged in: Funding for Ongoing Science, Advancing Rare Disease Research and Regulatory Science
For decades, NORD has pursued federal and state policies that will change the lives of Americans impacted by rare diseases for the better. NORD’s work can be viewed below. This page is updated daily to provide timely information. Please contact us if you have questions or need additional information.
NORD and other patient organizations urge Congressional leadership to include the PASTEUR Act in the end-of-year package
Published: Nov 16, 2022
Tagged in: Funding for Ongoing Science, Advancing Rare Disease Research and Regulatory Science
NORD sends comments to FDA on clinical outcome assessments
Published: Sep 27, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science, Patient Focused Drug Development
NORD submits a statement for the record on H.R. 7667, the Food and Drug Amendments of 2022.
Published: May 11, 2022
Tagged in: User Fee Act, Advancing Rare Disease Research and Regulatory Science
NORD submits a statement for the record to the Senate Committee on Health, Education, Labor and Pension regarding the FDA’s user fee agreements
Published: Apr 5, 2022
Tagged in: User Fee Act, FDA’s Accelerated Approval Pathway, Advancing Rare Disease Research and Regulatory Science
NORD submits a testimony to the Committee on Energy and Commerce’s Subcommittee on Health hearing on “The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight”
Published: Mar 17, 2022
Tagged in: User Fee Act, Advancing Rare Disease Research and Regulatory Science
NORD joins Friends of Cancer Research and 50 other organizations in letter to the Senate supporting the nomination of Dr. Robert Califf to be Commissioner of the FDA
Published: Dec 1, 2021
Tagged in: Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science