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, American Heart Association, and 50 other Patient Organizations Sign on to Letter to Senate Labor, HHS Subcommittee on Appropriations Requesting Increased Funding for CDC’s National Center for Chronic Disease Prevention and Health Promotion
Published: Mar 17, 2021
Tagged in: Appropriations
Coalition letter to members of the Rhode Island House Committee on Health and Human Services in support of, HB 5704, step therapy reform legislation.
Published: Mar 16, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD, Hemophilia of SC and 11 other patient organizations submit testimony to the South Carolina House Subcommittee I, Health and Environmental Affairs in support of House Bill 3956 to establish an RDAC
Published: Mar 15, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and Rare Action Network Volunteer Ambassador testimony to the South Carolina House Subcommittee I, Health and Environmental Affairs in support of House Bill 3956 to establish an RDAC
Published: Mar 15, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Letter to the Arizona House Health and Human Services Committee regarding step therapy reform
Published: Mar 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and several patient organizations ask Texas State Senator Kolkhorst for support to establish a Rare Disease Advisory Council (RDAC)
Published: Mar 11, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to Governor Northam of Virginia requesting he sign HB 1995 and HB 2332 into law to create an RDAC and state-based reinsurance program
Published: Mar 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 21 Other Organizations Send Letter to House Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening
Published: Mar 9, 2021
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD and 21 Other Organizations Send Letter to Senate Labor, HHS Appropriations Subcommittee Regarding Increased Funding for Newborn Screening
Published: Mar 9, 2021
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD, Hemohilia of SC and several other patient organizations submit a letter of support to Chairman Howard on H3956, to establish a Rare Disease Advisory Council in South Carolina
Published: Mar 8, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Comments on FDA Draft Guidance: Submissions for Individualized Antisense Oligonucleotide Drug Products
Published: Mar 8, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD and several patient organizations submit letter of support to the California Senate Committee on Health for SB 247, a bill to establish a Rare Disease Advisory Council (RDAC) and ombudsperson
Published: Mar 3, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the Oregon House Committee on Health Care regarding utilization management
Published: Mar 2, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD Submits Testimony to the Ohio House Insurance Committee in Support of House Bill 122
Published: Mar 2, 2021
Tagged in: Telehealth
NORD Submits Letter of Supporting Telehealth for House Energy & Commerce Health Subcommittee Hearing: The Future of Telehealth: How COVID-19 Is Changing the Delivery of Virtual Care
Published: Mar 2, 2021
Tagged in: COVID-19
Telehealth
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation Letter to the Advisory Committee on Immunization Practices (ACIP), Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Mar 1, 2021
Tagged in: Access to Care
COVID-19
NORD and several patient organizations thank Arkansas Rep. Michelle Gray for cosponsoring SB 143, a bill to create a Rare Disease Advisory Council
Published: Mar 1, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Ohio Alliance for the Advancement of Telehealth in Supporting Ohio H.B. 122
Published: Feb 24, 2021
Tagged in: Telehealth
NORD joins coalition testimony opposing Ohio Senate Bill 17 to the Government Oversight and Reform Committee
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Ambassador testimony opposing Ohio Senate Bill 17 to the Government Oversight and Reform Committee
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins a coalition amicus curiae brief to the United States Supreme Court opposing the use of work requirements in the Medicaid program.
Published: Feb 24, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD testimony on House Bill 5081 to the Rhode Island House Health and Human Services Committee
Published: Feb 23, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Testimony on Missouri House Bill 995 to Special Committee on Government Oversight
Published: Feb 23, 2021
Tagged in: Research
NORD joins a coalition letter to the Minnesota House Commerce Finance and Policy Committee in support of House File 633
Published: Feb 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine
Published: Feb 17, 2021
Tagged in: Access to Care
COVID-19
Coalition letter to South Dakota Governor Noem requesting a veto of Senate Bill 87
Published: Feb 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD and Rare Action Network Volunteer submit written testimony in support of Virginia Rare Disease Advisory Council (RDAC) legislation
Published: Feb 11, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition Statement in Support of Medicaid Coverage Provisions in COVID-19 Relief Package
Published: Feb 11, 2021
Tagged in: Access to Care
COVID-19
NORD Letter of Support to the Senate Finance Committee on the Nomination of Attorney General Xavier Becerra to be Secretary of HHS
Published: Feb 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD Letter of Support to the Senate HELP Committee on the Nomination of Attorney General Xavier Becerra to be Secretary of HHS
Published: Feb 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
Coalition one-pager opposing South Dakota Senate Bill 87, a bill with serious risks for South Dakotans with pre-existing conditions
Published: Feb 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition Statement to the House Ways and Means committee on COVID-19 relief measures
Published: Feb 10, 2021
Tagged in: Access to Care
COVID-19
NORD and Rare Action Network Volunteers submit written testimony in support of New Jersey Rare Disease Advisory Council (RDAC) legislation
Published: Feb 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to the Virginia House of Delegates in support of a reinsurance program for Virginia’s health insurance marketplace.
Published: Feb 5, 2021
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD letter to the Arkansas Speaker of the House regarding step therapy reform
Published: Feb 5, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Rare Action Network Volunteer Ambassador submit written testimony in support of Arkansas Rare Disease Advisory Council (RDAC) legislation
Published: Feb 5, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition statement asking that the Administration rescind policies that would jeopardize access to medically necessary prescription drugs.
Published: Feb 4, 2021
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comment letter on proposed extension of Arizona’s 1115 Demonstration Project
Published: Feb 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Oregon House Committee on Health Care in support of HB 2508, a bill to improve telehealth access
Published: Feb 3, 2021
Tagged in: Telehealth
NORD and Rare Action Network Volunteers submit written testimony in support of Florida Rare Disease Advisory Council (RDAC) legislation
Published: Feb 3, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Letter to the Arkansas House Public Health, Welfare and Labor Committee regarding step therapy reform
Published: Feb 3, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD Letter to the Arizona Senate Health and Human Serivces Committee regarding step therapy reform
Published: Feb 3, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Chair of the Oregon Senate Committee on Health Care regarding copay assistance
Published: Feb 2, 2021
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD Letter to Nebraska Banking, Commerce and Insurance Committee Regarding Step Therapy Legislation
Published: Feb 1, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Patient Community Health Care Priorities for Reconciliation
Published: Feb 1, 2021
Tagged in: Access to Affordable, Adequate Coverage
COVID-19
Patient Community Priorities for Future COVID-19 Legislation
Published: Feb 1, 2021
Tagged in: COVID-19
Patient organizations applaud Executive Orders to protect patients with pre-existing conditions.
Published: Jan 28, 2021
Tagged in: Access to Affordable, Adequate Coverage
Coalition Press Release Urging Connecticut Department of Health to Issue Guidance Prevent Discriminatory Rationing of COVID-19 Care
Published: Jan 26, 2021
Tagged in: Anti-discrimination
COVID-19
Coalition one-pager in support of Arizona Senate Bill 1270, a bill regarding step therapy protocols
Published: Jan 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter of thanks to Senator Missy Irvin, sponsor of Arkansas SB 143, a bill to create a Rare Disease Advisory Council
Published: Jan 22, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)