For decades, NORD has pursued federal and state policies to improve the lives of Americans impacted by rare diseases. This page is updated daily to provide timely information on our policy efforts. Please contact [email protected] if you have questions or need additional information.
NORD Signs on to Letter to Ensure Robust Appropriations for the NIH and Reaffirm Indirect Cost Reimbursements
Published: Mar 4, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
Public Health
Research
NORD CEO Statement: Navigating Proposed Policy Changes and Their Impact on Rare Disease Advocacy
Published: Feb 14, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Public Health
Research
NORD and other stakeholders submit letter to Congress urging passage of the PASTEUR Act
Published: Feb 29, 2024
Tagged in: Funding for Ongoing Science
Public Health
Research
NORD’s Statement in Support for Reauthorization of Rare Pediatric Disease Priority Review Voucher Program
Published: Feb 15, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Research
Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community
Published: Jun 30, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
Medicare, Medicaid, and Private Health Insurance Coverage
Orphan Drug Act
Research
NORD provides comments in support of the FDA’s Patient Focused Drug Development Listening Meeting ‘Methods and Approaches for Capturing Post-Approval Safety and Efficacy Data on Cell and Gene Therapy Products’
Published: May 25, 2023
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Research
NORD submits comments on “Considerations for the Design and Conduct of Externally Controlled Trials for Drug and Biological Products Guidance for Industry” (Docket No. FDA-2022-D-2983-0002)
Published: May 2, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
Research
NORD submits comments in response to NIH Request for Information: Developing Consent Language for Future Use of Data and Biospecimens
Published: Sep 29, 2021
Tagged in: Access to Diagnostics
Newborn Screening
Research
NORD and 86 other organizations ask for the removal of provisions related to the Orphan Drug Tax Credit in the House version of the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD and 86 other organizations oppose the Senate including changes to the Orphan Drug Tax Credit in the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD Joins with Research!America and Over 200 other Organizations to Support the Research Investment to Spark the Economy (RISE) Act
Published: Mar 24, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Research
NORD Testimony on Missouri House Bill 995 to Special Committee on Government Oversight
Published: Feb 23, 2021
Tagged in: Research
NORD Submits Comments on Docket No. NOT-AR-22-023; Request for Information on Themes for the NIAMS Strategic Plan for Fiscal Years 2025-2029
Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Public Health
Research