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 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 sends letter to CMS supporting Part D Out-of-Pocket Caps
Published: Jun 5, 2023
Tagged in: Out of Pocket Prescription Drug Costs
National Organization for Rare Disorders Urges Congress To Protect Funding for Rare Disease Research, Commends Exclusion of Work Requirements for Medicaid in Debt Ceiling Deal
Published: Jun 2, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and leading patient organizations urge the U.S. Department of Health & Human Services to protect Medicaid coverage by pausing redetermination in states with high procedural termination rates
Published: May 31, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD submits comments to the FDA on Clinical Trial Considerations to Support Accelerated Approval of Oncology Therapeutics
Published: May 26, 2023
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
FDA’s Accelerated Approval Pathway
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 to the NJ Governor Regarding the Establishment of the NJ Rare Disease Advisory Council (RDAC)
Published: May 23, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 11 national patient advocacy organizations submit comments opposing work requirements in Arkansas’ ARHOME 1115 Amendment.
Published: May 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 53 advocacy organizations urge the Department of Children and Families (DCF) to pause Florida’s current Medicaid redetermination process
Published: May 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD submits comments on the Information Collection Request (ICR) Form for Negotiation Data Elements under Section 11001 and 11002 of the Inflation Reduction Act
Published: May 22, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and other health organizations applaud Stay on Braidwood v Becerra lawsuit to protect coverage for preventive services
Published: May 15, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and patient organizations concerned by the loss of Medicaid coverage for nearly 75,000 Arkansans
Published: May 11, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and leading patient organizations urge the Senate HELP committee to pass meaningful PBM reform
Published: May 10, 2023
Tagged in: Access to Affordable Medicines
NORD and 78 patient organizations send letter to the HELP committee supporting the Retaining Access and Restoring Exclusivity (RARE) Act
Published: May 2, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD releases a statement for the record in support of S. 1214, the Retaining Access and Restoring Exclusivity (RARE) Act
Published: May 2, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD joins numerous organizations in requesting the Senate to continue supporting and funding the Congressionally Directed Medical Research Programs (CDMRP) at the DoD
Published: May 2, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and many patient organizations send a letter to the House of Representatives encouraging continued support and funding for the Congressionally Directed Medical Research Programs (CDMRP) at the DoD
Published: May 2, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and critical patient advocacy organizations support passing Expanded Access to Biomarker Testing in New York (A1673/ S1196)
Published: May 2, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
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 joins patient organizations in filing an amicus curiae brief in support of the reversal of the Texas district court’s April 7, 2023 order
Published: May 1, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 24 organizations convey concerns regarding AHPs and benefit exemption for telehealth-only plans
Published: Apr 26, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and numerous patient organizations urge Congress to protect Medicaid from funding cuts during budget negotiations
Published: Apr 24, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD and 29 patient organizations strongly oppose adding “work requirements” to the Medicaid program
Published: Apr 24, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 32 patient and provider groups urge courts to preserve FDA’s authority and applaud Supreme Court ruling
Published: Apr 24, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 200+ advocacy organizations urge HHS to protect Medicaid continuous coverage
Published: Apr 24, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD and 38 other patient organizations submit a letter to the TX Senate Health and Human Services Committee urging them to support SB 1408, Rare Disease Advisory Council legislation
Published: Apr 19, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments to the TX House Insurance Committee on HB 3188, biomarker legislation
Published: Apr 18, 2023
Tagged in: Access to Diagnostics
Founding member NORD issues fiscal year 2024 budget request with the NCATS Alliance
Published: Apr 18, 2023
Tagged in: Appropriations
Ensuring Adequate Funding for NIH
NORD and leading patient organizations urge Congress to reject adding a ‘work requirement’ policy to the Medicaid program
Published: Apr 17, 2023
Tagged in: Access to Affordable, Adequate Coverage
Public Health
NORD and 100 rare disease patient organizations send letter to CMS regarding Medicare Drug Price Negotiation Program Guidance
Published: Apr 14, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD comments on Medicare Drug Price Negotiation Program Guidance
Published: Apr 14, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and 51 patient groups release a statement thanking the Justice Department’s stay request in Braidwood lawsuit
Published: Apr 13, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD and other patient and provider groups sign onto a one-pager to express support for HB 4131, legislation that would improve telehealth access in MI
Published: Apr 12, 2023
Tagged in: Telehealth
NORD submits written testimony to the IN Senate Health and Provider Services Committee in support of HB 1201, legislation to create a Rare Disease Advisory Council
Published: Apr 12, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 29 patient and provider groups warn that Mifepristone ruling threatens all FDA-approved drugs
Published: Apr 11, 2023
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
NORD submits comments to the NV Assembly Committee on Health and Human Services on A.B. 155, biomarker legislation
Published: Apr 5, 2023
Tagged in: Access to Diagnostics
NORD and 15 organizations send letter to Senate Committee on Commerce and Labor urging the passage of SB 194
Published: Apr 4, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD and other organizations urge the FDA to fund the Pediatric Device Consortia Grant Program in FY24
Published: Apr 4, 2023
Tagged in: Access to Innovative Medicines and Therapies
NORD and other patient organizations submitted an amicus curiae brief on the Neese v. Becerra court case
Published: Apr 3, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
Public Health
NORD and patient groups urge U.S. Court of Appeals to prevent discrimination against LGBTQ+ patients
Published: Apr 3, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Public Health
NORD and coalition partners statement on the court decision in Braidwood v Becerra
Published: Mar 30, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the Hawaiʻi House Committee on Finance in support of SB 674, a bill to adopt the Interstate Medical Licensure Compact
Published: Mar 29, 2023
Tagged in: Telehealth
NORD and other patient organizations urge CMS to host listening sessions for Inflation Reduction Act implementation
Published: Mar 27, 2023
Tagged in: Access to Affordable Medicines
Out of Pocket Prescription Drug Costs
NORD and 30 other advocacy groups release statement on why healthcare is unaffordable to the House Committee on Ways and Means
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and other patient advocacy groups send letter to President Biden and Vice President Harris urging them tp protect Medicare, Medicaid, and Social Security Programs
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and other patient advocacy groups send letter to Congressional Leadership urging them to protect Medicare, Medicaid, and Social Security Programs
Published: Mar 23, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD sends letter to Colorado Prescription Drug Affordability Board regarding Senate Bill 21-175
Published: Mar 23, 2023
Tagged in: Out of Pocket Prescription Drug Costs
NORD and other patient advocacy groups send letter to CMS on Georgia SBE Blueprint Letter
Published: Mar 22, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the Florida Senate Health Policy Committee & House Healthcare Regulation Subcommittee in support of SB 1218/HB 805, biomarker legislation
Published: Mar 21, 2023
Tagged in: Access to Diagnostics
NORD and other stakeholders send letter to Minnesota lawmakers encouraging them to support the expansion of biomarker testing
Published: Mar 17, 2023
Tagged in: Access to Diagnostics
NORD and other stakeholders release fact sheet on biomarker testing for Minnesota
Published: Mar 17, 2023
Tagged in: Access to Diagnostics
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
