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 and 21 patient organizations praise “Family Glitch” fix
Published: Oct 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and other patient organizations submit comments on Tennessee’s TennCare program amendment
Published: Oct 7, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and partners release the 2023 Medicare Part D open enrollment guide
Published: Oct 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD sends letter with the All Copays Count Coalition to CMS to address copay accumulator adjustment policies in the 2024 Notice of Benefit and Payment Parameters
Published: Sep 29, 2022
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Out of Pocket Prescription Drug Costs
NORD sends comments to FDA on clinical outcome assessments
Published: Sep 27, 2022
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Patient Focused Drug Development
NORD and other patient organizations urge the Supreme Court to protect patient rights under Medicaid
Published: Sep 23, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 20 organizations to send letter of support on patient protections and consumer-focused policies to Secretary Becerra
Published: Sep 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins 375 organizations urging Senate leadership to take action on telehealth
Published: Sep 13, 2022
Tagged in: Telehealth
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 and 109 organizations send letter to Senate Finance and House Energy and Commerce in support of the Accelerating Kids’ Access to Care Act
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out-of-State Care for Children on Medicaid
NORD and other patient organizations respond to ruling in Braidwood v Becerra
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD letter to CA Governor Newsom in support of California AB 1880, utilization management reform legislation
Published: Sep 1, 2022
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 24 organizations send letter to Governor Newsom urging the passage of SB 912
Published: Sep 1, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD and 11 organizations submit comments to Secretary Becerra on the Washington Medicaid Transformation Project Waiver Renewal
Published: Aug 31, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 15 organizations send feedback on the Tennessee TennCare Medicaid program
Published: Aug 19, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 50 organizations urge Secretary Becerra to strengthen current 1115 regulations
Published: Aug 17, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD statement on the passage of the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 27 other organization applaud major health care improvements under the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 26 organizations send letter to Congressional leadership to applaud expansion of APTC within the Inflation Reduction Act
Published: Aug 5, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Appropriations
NORD and 34 other organizations submit feedback on Medicare Part D in the Inflation Reduction Act of 2022
Published: Aug 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 98 organizations send letter to Congressional leadership to resume negotiations to develop a comprehensive FDA user fee package
Published: Aug 1, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD and 23 organizations release statement on Kelley v Beccerra case that threatens preventative services
Published: Jul 22, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD sends letter urging President Biden and Vice President Harris to include medical nutrition as a topic of discussion for the September 2022 Conference on Hunger, Nutrition, and Health.
Published: Jul 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Medical Nutrition
NORD and 40 other organizations sign-on to reform step therapy in Massachusetts
Published: Jul 7, 2022
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
NORD and 12 organizations send comment letter to Secretary Yellen and Secretary Becerra on Minnesota’s Section 1332 State Innovation Waiver Extension Application
Published: Jun 30, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Section 1332 Waivers
NORD and 13 organizations submit comments to Secretary Yellen and Secretary Becerra on Idaho’s Section 1332 State Innovation Waiver
Published: Jun 30, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Section 1332 Waivers
NORD submits comments on the FY 2023 Hospital Inpatient Prospective Payment Systems for Acute Care Hospitals (IPPS)
Published: Jun 17, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 71 organizations urge Senate HELP committee to incorporate Title V in the House PDUFA bill
Published: Jun 8, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
Clinical Trials
User Fee Act
NORD and 27 organizations endorse model legislation on biomarker access to the National Council of Insurance Legislators
Published: Jun 7, 2022
Tagged in: Access to Diagnostics
Access to Innovative Medicines and Therapies
Genetic Testing
NORD and 27 organizations submit comments to Secretary Janet Yellen on the affordability of employer coverage for family members of employees
Published: Jun 6, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 84 organizations urge Senate HELP leadership to incorporate the RARE Act into the FDA Safety and Landmarks Advancement Act
Published: Jun 3, 2022
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Protecting FDA Standards for Safe and Effective Drugs
RARE Act
NORD and 73 organizations urges CMS to reinstate step therapy prohibition in Medicare Advantage plans for Part B drugs
Published: May 31, 2022
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 23 member organizations request action from CMS regarding short-term, limited-duration health insurance plans.
Published: May 25, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD and 75 organizations urge Congress to support step therapy reform
Published: May 24, 2022
Tagged in: Access to Innovative Medicines and Therapies
NORD drafts comments on Senate Health, Education, Labor and Pensions committee’s discussion on FDA Safety and Landmark Advancements Act
Published: May 22, 2022
Tagged in: Access to Innovative Medicines and Therapies
Expanded Access
FDA’s Accelerated Approval Pathway
Orphan Drug Act
NORD and 23 patient organizations ask Congressional leadership to address the Medicaid coverage gap and make enhanced APTCs permanent through budget reconciliation
Published: May 20, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and dozens of patient advocacy organizations urge Congress to make the enhanced APTCs permanent
Published: May 18, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins Research!America and other health care organizations in urging Congress to sustain federal funding for medical and public health research in the FY23 omnibus appropriations bill
Published: May 16, 2022
Tagged in: Appropriations
NORD and ten patient organizations submit comments in support of Connecticut’s Section 1115 waiver application
Published: May 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 13 patient organizations submit a letter in support of Alaska’s 1332 reinsurance waiver demonstration
Published: May 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD and 14 other patient organizations send a letter to Governor Polis urging him to sign SB 186 into law, legislation to establish a CO Rare Disease Advisory Council
Published: May 12, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits a statement for the record on H.R. 7667, the Food and Drug Amendments of 2022.
Published: May 11, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD and 87 other patient organizations call on Congressional leaders to provide robust funding for Consumer Assistance Programs
Published: May 4, 2022
Tagged in: Appropriations
NORD submits a letter of support to the CT Speaker of the House in support of House Bill 5260 to establish a Rare Disease Advisory Council
Published: Apr 28, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins with American Academy of Pediatrics and 16 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA
Published: Apr 27, 2022
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Appropriations
NORD and five other patient organizations issue one-pager on the importance of biomarker testing and precision medicine
Published: Apr 27, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD and eight coalition partners send comments to the federal government in support of Maine’s proposed 1332 reinsurance waiver
Published: Apr 26, 2022
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD submits written testimony to the CO Senate Committee on Health & Human Services Committee in support of Senate Bill 186 to establish a Rare Disease Advisory Council
Published: Apr 25, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins the Patients and Providers for Medical Nutrition Equity in endorsing the Medical Nutrition Equity Act (S.2013/H.R. 3783)
Published: Apr 20, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD and 9 patient organizations sign onto a comment letter to the WA State Office of the Insurance Commissioner on the draft for health care sharing ministries
Published: Apr 19, 2022
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans