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 policy@rarediseases.org if you have questions or need additional information.
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
NORD letter to Texas Governor Greg Abbott in support of SB 747 and SB 748, legislation pertaining to newborn screening
Published: Jun 3, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to Iowa in support of a strong newborn screening program
Published: Jan 30, 2019
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter in support of adding MPS I and Pompe to Indiana’s newborn screening panel
Published: Oct 26, 2018
Tagged in: Access to Diagnostics
Newborn Screening
NORD comments regarding funding for newborn screening in Texas’ Legislative Appropriations Request
Published: Jun 21, 2018
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD letter in support of adding SMA to Georgia’s newborn screening panel
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Newborn Screening
NORD letter to Pennsylvania’s Rare Disease Council regarding the state’s newborn screening panel
Published: Jan 17, 2018
Tagged in: Access to Diagnostics
Newborn Screening
Rare Disease Advisory Councils (RDACs)
Coalition letter opposing proposed budget cuts to newborn screening programs
Published: Jul 6, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter urging Congress to provide funding for newborn screening in FY 2018 appropriations
Published: Apr 4, 2017
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD letter in support of Florida House Bill 963, an act regarding newborn screening
Published: Mar 21, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter urging Congress to preserve funding for programs that provide critical support to state newborn screening programs
Published: Feb 10, 2017
Tagged in: Access to Diagnostics
Newborn Screening
