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 24 patient organizations submit recommendations to the Centers for Medicare and Medicaid Services (CMS) in response to the Request for Information: Access to Coverage and Care in Medicaid and CHIP
Published: Apr 18, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 7 other patient organizations on a letter to support an amendment to Hawaii packaging bill, HB2399, that could impact the price and access to several food and beverage items, including infant formula, medical foods, and foods for special dietary use.
Published: Apr 15, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD submits written testimony to Alaska House Finance Committee in support of HB 265, an act related to telehealth services in the state.
Published: Apr 14, 2022
Tagged in: Telehealth
NORD comments to HHS regarding Oregon’s proposed Medicaid 1115 waiver renewal and the importance of accelerated approval treatments
Published: Apr 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
FDA’s Accelerated Approval Pathway
Medicaid Section 1115 Waivers
NORD and 17 patient advocacy organizations submit comments to CMS on Oregon’s proposed Section 1115 waiver
Published: Apr 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 11 patient advocacy organizations submit comments to CMS regarding New Jersey’s Medicaid 1115 Waiver renewal
Published: Apr 9, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD submits written testimony to the California Assembly Committee on Health in support of Assembly Bill 1880 to improve utilization management protocols.
Published: Apr 5, 2022
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits a statement for the record to the Senate Committee on Health, Education, Labor and Pension regarding the FDA’s user fee agreements
Published: Apr 5, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
FDA’s Accelerated Approval Pathway
User Fee Act
NORD submits written testimony to the Tennessee House Finance, Ways, and Means Committee in support of House Bill 677 on step therapy reform
Published: Apr 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 26 patient organizations in letter to congressional leadership to reinstate guaranteed emergency paid sick and family caregiving leave.
Published: Apr 4, 2022
Tagged in: Paid Leave
NORD and 90 organizations representing patients with rare diseases call on Congress to strengthen the Accelerated Approval pathway as part of PDUFA reauthorization
Published: Apr 4, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD and 90 organizations representing patients with rare diseases call on HHS to strengthen and improve the Accelerated Approval pathway
Published: Apr 4, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD submits written testimony to CT Public Health Committee in support of Senate Bill 375 to extend the expansion of telehealth services until June 30, 2024
Published: Mar 30, 2022
Tagged in: Telehealth
NORD and 14 other patient organizations submit a letter to the ME Appropriations & Financial Affairs Committee in support of LD 972 to establish a Rare Disease Advisory Council
Published: Mar 22, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits a testimony to the Committee on Energy and Commerce’s Subcommittee on Health hearing on “The Future of Medicine: Legislation to Encourage Innovation and Improve Oversight”
Published: Mar 17, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD joins 84 organizations in submitting comments to the Healthy Futures Task Force on the issue of step therapy
Published: Mar 16, 2022
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins 14 patient organizations in a letter to the D.C. City Council’s Committee on Health opposing the exemption of professional employer organizations from vital patient protections
Published: Mar 15, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD and 13 patient organizations urge Congressional leadership to take action to address the high out-of-pocket costs in the Medicare Part D program
Published: Mar 15, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD and 29 patient organizations submit a letter of support for expanding access to biomarker testing in Ohio
Published: Mar 14, 2022
Tagged in: Access to Diagnostics
Genetic Testing
NORD submits written testimony to the CT Public Health Committee in support of House Bill 5260 to establish a Rare Disease Advisory Council
Published: Mar 10, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 20 organizations in signing letter to the Minnesota House Health Finance and Policy committee to support the copay-only bill language in HF 3717
Published: Mar 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD and 16 other patient organizations submit a letter to Governor Polis to support Senator Ginal’s draft legislation to create a Rare Disease Advisory Council
Published: Mar 3, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits written testimony to the Kentucky House Banking & Insurance Committee in support of Senate Bill 140 on step therapy reform
Published: Mar 2, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD submits written testimony to the Tennessee House Insurance Subcommittee in support of House Bill 677 on step therapy reform
Published: Mar 2, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD submits written testimony to the Tennessee House Insurance Committee in support of House Bill 677 on step therapy reform
Published: Mar 2, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 19 other organizations in signing onto letter to CMS CCIIO regarding their proposed risk adjustment policy that was included in the NBPP 2023
Published: Mar 1, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD and national patient organizations submit comments in support of Virginia’s proposed reinsurance program
Published: Feb 25, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Section 1332 Waivers
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