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 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
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)
