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 Issues Position Statement: State Implementation of Medicaid Community Engagement Requirements (H.R.1)
Published: May 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Comments on FDA’s Proposed Plausible Mechanism Framework Guidance
Published: Apr 27, 2026
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Genetic Testing
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
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 16 other patient organizations submit a letter to Colorado Senate leadership to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council
Published: Feb 24, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins a one pager with other patient advocacy organizations in support of Kentucky’s Senate Bill 140 on step therapy reform
Published: Feb 23, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD submits written testimony to the MI Senate Health Policy and Human Services Committee in support of House Bill 4654 to establish a Rare Disease Advisory Council
Published: Feb 23, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 21 other organizations in signing onto letter providing feedback to the Healthy Future Task Force’s Affordability request for information.
Published: Feb 23, 2022
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD and 26 other patient organizations send a community stakeholder budget request to the Senate Subcommittee Three on Health and Human Services to create an RDAC
Published: Feb 16, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits written testimony to the Washington House Health Care & Wellness Committee in support of Senate Bill 5886 to establish an RDAC
Published: Feb 16, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 19 patient organizations thank the Centers for Medicare and Medicaid Services for the agency’s recent decision to remove a critical financial barrier to Medicaid coverage by rejecting and phasing out premiums in Section 1115 waivers
Published: Feb 14, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 28 national patient organizations send letter to Congressional Leaders urging them to continue to work to enact policies that expand access to quality and affordable healthcare in the budget reconciliation process
Published: Feb 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
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 submits letter of support to the ME Committee on Appropriations and Financial Affairs in support of Legislative Document 972, Rare Disease Advisory Council legislation
Published: Feb 3, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 19 other patient organizations submit a letter to the GA House Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council
Published: Feb 3, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits written testimony to the GA House Health and Human Services Committee in support of House Bill 918 to establish a Rare Disease Advisory Council
Published: Feb 3, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 40 patient organizations in submitting a letter to the administration to request the reinstatement of guaranteed emergency paid sick and family caregiving leave for all U.S. workers
Published: Feb 3, 2022
Tagged in: Paid Leave
NORD and 13 patient organizations submit comments to the federal government in support of Colorado’s 1332 waiver application
Published: Feb 2, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Section 1332 Waivers
NORD joins hundreds of organizations in establishing a pathway for comprehensive telehealth reform
Published: Jan 31, 2022
Tagged in: Telehealth
Coalition letter to the Administration to issue new regulations limiting the sale and availability of short-term, limited-duration plans (STLDs)
Published: Jan 31, 2022
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD submits written testimony to the Washington Senate Health and Long-Term Care Committee in support of Senate Bill 5886 to establish an RDAC
Published: Jan 31, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2023
Published: Jan 28, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD joins a one pager with other patient advocacy organizations in support of Arizona’s House Bill 2144 on biomarker testing coverage
Published: Jan 25, 2022
Tagged in: Access to Innovative Medicines and Therapies
Gene Therapies
NORD and 17 other patient organizations submit a letter to the MS House Public Health and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council
Published: Jan 24, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of thanks to Sen. Jeff Holy, sponsor of Washington SB 5886, a bill to create a Rare Disease Advisory Council
Published: Jan 20, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of thanks to Sen. John Jagler, sponsor of Wisconsin SB 689, a bill to create an a Rare Disease Advisory Council
Published: Jan 19, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
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 and 12 other patient organizations submit letter of support to the Wisconsin Assembly Committee on Health urging them to support a Rare Disease Advisory Council
Published: Jan 11, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 19 other patient organizations submit comments to the federal government regarding the harmful Georgia Access Model 1332 waiver
Published: Jan 7, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the state of Oregon on the rare disease impact of proposals included in the draft 1115 Demonstration Waiver for the Oregon Health Plan.
Published: Jan 6, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 14 patient organizations submit comments on MN’s mandated health benefit review pertaining to copayments for prescription drugs
Published: Dec 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 12 other patient organizations submit a letter to the MI Senate Health Policy and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council
Published: Dec 7, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 20 patient organizations submit comments on rulemaking to implement the No Surprises Act
Published: Dec 6, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD joins Friends of Cancer Research and 50 other organizations in letter to the Senate supporting the nomination of Dr. Robert Califf to be Commissioner of the FDA
Published: Dec 1, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD and more than 140 organizations submit letter of support for H.R. 5801, the ‘HELP Copays Act’
Published: Nov 29, 2021
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD submits comments to FDA on draft guidance: Benefit-Risk Assessment for New Drug and Biological Products
Published: Nov 22, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD and seventeen organizations submit comments on the Proposed Repeal of HHS Rules on Guidance, Enforcement, and Adjudication Procedures
Published: Nov 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD and 26 patient groups praise House passage of legislation that extends quality, affordable health coverage to millions
Published: Nov 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
COVID-19
Medicare Home Infusion
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
Paid Leave
NORD joins the NW Rare Disease Coalition and 21 other organizations in letter to the Washington Legislature asking for their support to create an RDAC
Published: Nov 17, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and coalition partners submit comments on Colorado’s 1332 state innovation waiver application to implement the Colorado Option program
Published: Nov 15, 2021
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD joins other patient advocacy organizations in comments to the Colorado Division of Insurance Commissioner on the Colorado Standard Option Health Benefit Plan
Published: Nov 12, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD, MDA, and FARA letter to House and Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22
Published: Nov 10, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
NORD letter of support to the Michigan Speaker of the House in support of House Bill 4654, legislation to establish a Rare Disease Advisory Council (RDAC)
Published: Nov 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins with American Academy of Pediatrics and 18 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA
Published: Nov 8, 2021
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Appropriations
NORD and thirty patient advocacy organizations submit comments on the Department of Health and Human Services strategic plan for Fiscal Years 2022-2026
Published: Nov 7, 2021
Tagged in: Access to Affordable, Adequate Coverage
Statement from NORD and members of the Patients and Caregivers Paid Leave Coalition applauding House lawmakers for taking action to amend the Build Back Better legislation to include the creation of a paid medical and family leave program
Published: Nov 5, 2021
Tagged in: Paid Leave
NORD and 8 patient organizations send letter to CMS supporting standardized health plan options in the Health Insurance Marketplaces
Published: Nov 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 23 patient organizations send letter to members of the Ohio Senate urging the rapid passage of HB 122
Published: Nov 3, 2021
Tagged in: Telehealth
NORD comments on Prescription Drug User Fee Act VII Commitment Letter
Published: Oct 28, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD joins coalition statement expressing disappointment over the omission of a paid leave program from the latest version of the Build Back Better Act
Published: Oct 28, 2021
Tagged in: Paid Leave
NORD, along with the ALS Association, the Alliance for Connected Care and 235 other patient organizations call on governors to protect access to telehealth
Published: Oct 28, 2021
Tagged in: Telehealth
NORD and 12 other patient organizations submit a letter to the Wisconsin Legislature asking for their support to create an RDAC
Published: Oct 21, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins other patient advocacy organizations in comments on the Colorado Standard Option Health Benefit Plan
Published: Oct 20, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 16 patient organizations submit comments on Montana’s Section 1115 waiver application
Published: Oct 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
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