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 Letter to Northeast Public Health Collaborative on State RDAC Resources
Published: Sep 23, 2025
Tagged in: Access to Diagnostics
COVID-19
Emergency Medical Services
Newborn Screening
Public Health
Rare Disease Advisory Councils (RDACs)
NORD Comments on the Consideration of Adding Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel
Published: Sep 15, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Comments on the Consideration of Adding Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel
Published: Sep 15, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Joins Six Organizations in Statement on Federal Newborn Screening Legislation
Published: Jul 8, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Joins 271 Organizations in Community Letter to HHS on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children and Proposed Elimination of other Federal Newborn Screening Infrastructure
Published: May 5, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Rare Disease Centers of Excellence Letter to HHS on Termination of ACHDNC
Published: Apr 6, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD CEO Statement on the Termination of the Advisory Committee on Heritable Disorders in Newborns and Children
Published: Apr 4, 2025
Tagged in: Access to Diagnostics
Newborn Screening
Public Health
NORD Issues Statement Regarding the Department of Health and Human Services Reduction in Force
Published: Apr 1, 2025
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Medicare, Medicaid, and Private Health Insurance Coverage
Newborn Screening
Protecting FDA Standards for Safe and Effective Drugs
Public Health
NORD Supports HB1697 to Require the Board of Health to Consider Adding Recommended Uniform Screening Panel (RUSP) Conditions to Washington’s Newborn Screening Panel
Published: Feb 20, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Supports HB1782 to Require the Department of Health to Consider Adding Recommended Uniform Screening Panel (RUSP) Conditions to Virginia’s Newborn Screening Panel
Published: Feb 14, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Supports HB1782 to Require the Department of Health to Consider Adding Recommended Uniform Screening Panel (RUSP) Conditions to Virginia’s Newborn Screening Panel
Published: Feb 10, 2025
Tagged in: Access to Diagnostics
Newborn Screening
NORD Opposes Newborn Exemption Bill in Nebraska
Published: Jan 30, 2024
Tagged in: Newborn Screening
NORD joins 20 organizations in encouraging Congressional leadership to prioritize newborn screening programs in FY 2024 appropriations
Published: Jan 18, 2024
Tagged in: Access to Diagnostics
Newborn Screening
NORD and 55 organizations urge Senate HELP committee to take action on S. 350, The Newborn Screening Saves Lives Reauthorization Act of 2021
Published: Sep 12, 2022
Tagged in: Access to Diagnostics
Newborn Screening
NORD joins 78 other organizations on a letter to include the “Newborn Screening Saves Lives Reauthorization Act of 2021” in the omnibus spending bill for FY 2022
Published: Feb 4, 2022
Tagged in: Access to Diagnostics
Newborn Screening
NORD and coalition partners send letter to Congressional leaders asking that they increase funding for CDC and HRSA newborn screening programs
Published: Jan 14, 2022
Tagged in: Access to Diagnostics
Newborn Screening
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 21 Other Organizations Send Letter to House Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening
Published: Mar 9, 2021
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD and 21 Other Organizations Send Letter to Senate Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening
Published: Mar 9, 2021
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition Letter to House Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition Letter to Senate Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition letter urging Secretary Azar to ensure that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) can continue its work
Published: Dec 19, 2019
Tagged in: Access to Diagnostics
Newborn Screening
Coalition statement expressing appreciation over the introduction of the Newborn Screening Saves Lives Reauthorization Act in the Senate
Published: Jul 18, 2019
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter to Congress in support of the Newborn Screening Saves Lives Reauthorization Act (H.R.2507)
Published: Jun 24, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to the House Committee on Energy and Commerce in support of the Newborn Screening Saves Lives Reauthorization Act of 2019 (H.R. 2507)
Published: Jun 24, 2019
Tagged in: Access to Diagnostics
Newborn Screening
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