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 endorsement of the Accelerating Kids Access to Care Act, a bill that would ensure that children with Medicaid who require care out of state will not face unnecessary delays.
Published: May 11, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out-of-State Care for Children on Medicaid
NORD letter to Florida Governor urging him to sign SB 272/HB 1373 into law, to create a rare disease advisory council
Published: May 6, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins several patients groups in a statement to Congress to urge them to include health care affordability measures in the next legislative package
Published: May 6, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins other patient groups to the Minnesota House and Senate Conference Committee in support of adopting Article 5, Section 7 of the fourth engrossment of HF 2128 to create a copay benefit option for individual and small-group coverage
Published: May 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 21 other patient organizations submit a letter of support to the California Senate Appropriations Committee in support of Senate Bill 247 to establish an RDAC and Rare Disease Ombudsperson
Published: Apr 30, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the Oregon Senate Committee on Health Care regarding utilization management
Published: Apr 30, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits written testimony to Rhode Island’s Senate Health and Human Services Committee in support of Senate Bill 302, step therapy reform legislation
Published: Apr 29, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD statement to the House Ways and Means Committee for the Health Subcommittee Hearing: “Charting the Path Forward for Telehealth”
Published: Apr 28, 2021
Tagged in: Telehealth
NORD letter to the Oregon Senate Committee on Health Care in support of HB2508, a bill to improve telehealth access
Published: Apr 28, 2021
Tagged in: Telehealth
NORD and 26 other patient organizations submit a letter of support to the Louisiana House Committee on Health and Welfare in support of House Bill 460 to establish an RDAC
Published: Apr 27, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
Rare Action Network Volunteer Ambassador written testimony in support of Louisiana Rare Disease Advisory Council (RDAC)
Published: Apr 27, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins Leukemia & Lymphoma Society and Over 110 Other Organizations to Support Consumer Assistance Program Funding in Fiscal Year 2022 Labor, HHS Appropriations
Published: Apr 26, 2021
Tagged in: Access to Affordable, Adequate Coverage
Appropriations
NORD joins a coalition letter with over 30 patient advocacy organizations to President Biden outlining health care priorities for the next legislative package
Published: Apr 23, 2021
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 joins a coalition letter with over 30 patient organizations to Congressional leadership outlining health care priorities for the next legislative package
Published: Apr 23, 2021
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 one pager on step therapy patient protections at the state and federal level
Published: Apr 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter of support to the Delaware House and Human Development Committee in support of House Bill 160 to support increased access to telehealth after the COVID-19 pandemic
Published: Apr 22, 2021
Tagged in: Telehealth
NORD and coalition partners release press statement regarding the Missouri Senate Budget Committee’s failure to appropriate funding for Medicaid Expansion
Published: Apr 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins coalition letter with 19 additional patient organizations to HHS opposing Oklahoma’s request to eliminate retroactive eligibility for Medicaid patients
Published: Apr 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter of support to Iowa Senate leadership encouraging passage of House File 431 before the end of session to expand access to telehealth services
Published: Apr 16, 2021
Tagged in: Telehealth
NORD and 11 other patient organizations submit a letter of support to the Florida Speaker of the House in support of House Bill 1373 to establish an RDAC
Published: Apr 16, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter of support to the NJ Senate Commerce Committee Chair in support of Senate Bill 3051-step therapy reform legislation
Published: Apr 15, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD letter of support to Alaska Senate Health and Social Services committee in support of Senate Bill 78 to increase telehealth access
Published: Apr 15, 2021
Tagged in: Telehealth
NORD joins a one pager with several other patient organizations in support of the Safe Step Act (S.464 and H.R.2163)
Published: Apr 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins a coalition letter to the Minnesota House Ways and Means Committee to encourage the inclusion of HF 633 in the final omnibus bill, HF 2128
Published: Apr 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter of support for the nomination of Andrea Palm to be Deputy Secretary of Health and Human Services.
Published: Apr 13, 2021
NORD letter of support for the nomination of Chiquita Brooks-LaSure to be Administrator of the Centers for Medicare and Medicaid Services.
Published: Apr 13, 2021
NORD, Hemophilia of SC and 11 other patient organizations submit a letter of support to the South Carolina House Medical, Military, Public, and Municipal Affairs Committee in support of House Bill 3956 to establish an RDAC
Published: Apr 12, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins coalition letter urging the federal government to rescind rules that weaken the beneficiary protections in the Families First Coronavirus Response Act (FFCRA)
Published: Apr 10, 2021
Tagged in: Access to Care
COVID-19
CDC Response to NORD, ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation Letter to CDC Director, Dr. Walensky, Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Apr 9, 2021
Tagged in: Access to Care
COVID-19
NORD letter of thanks to Rep. Paul Hollis, sponsor of Louisiana HB 460, a bill to create a Rare Disease Advisory Council
Published: Apr 8, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins three other patient groups in a amicus brief opposing Data Marketing Plan arrangements that would be harmful for the rare disease community
Published: Apr 7, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and Rare Action Network Volunteer Ambassador testimony to the Maine Joint Health and Human Services Committee with suggested amendments in support of Legislative Document 972 to establish an RDAC
Published: Apr 7, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins patient advocacy groups to the Minnesota House Health Finance and Policy Committee to thank Chair Leiebling for including House File 633 in the Committee’s omnibus bill, House File 2128.
Published: Apr 6, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter to Governor Murphy and the NJ Senate in support of, A4815/S3051, step therapy reform legislation.
Published: Apr 5, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD testimony on Senate Bill 171 to the Rhode Island Senate Health and Human Services Committee
Published: Apr 1, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to the California Assembly Committee on Health regarding utilization management
Published: Mar 31, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins with 10 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA
Published: Mar 26, 2021
Tagged in: Access to Innovative Medicines and Therapies
Appropriations
Devices for Small Populations
NORD and coalition partners one pager in support of Illinois House Bill 1779 to require coverage of biomarker testing
Published: Mar 25, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins several patient organizations to present a report on junk plans titled “Under-Covered: How Insurance-Like Products are Leaving Patients Exposed
Published: Mar 25, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD Joins with Research!America and Over 200 other Organizations to Support the Research Investment to Spark the Economy (RISE) Act
Published: Mar 24, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Research
NORD and 27 additional patient advocacy organizations submit a statement to the House Energy & Commerce Committee supporting continued work on key policies that will improve access to health care for patients with serious and chronic health conditions.
Published: Mar 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD joins other patient organizations in comments to the Maine Bureau of Insurance on standardized plan rulemaking
Published: Mar 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and the Ohio Volunteer State Ambassador submit testimony to the Ohio House Insurance Committee in support of HB 122 to make telehealth changes permanent after the COVID-19 pandemic
Published: Mar 23, 2021
Tagged in: Telehealth
NORD signs onto a coalition one pager with numerous other patient organizations in support of the Safe Step Act of 2021 (S.464)
Published: Mar 22, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and Rare Action Network Volunteers submit written testimony to the Florida House Professions and Public Health Subcommittee in support of House Bill 1373 to establish an RDAC
Published: Mar 22, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins other patient organizations to the Minnesota Chair of the House Health Finance and Policy Committee to encourage the inclusion of HF 633 to the omnibus package
Published: Mar 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD Letter to Arkansas Representative Gray regarding recent amendments to SB 143
Published: Mar 18, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and several patient organizations ask Texas State Representative Capriglione for support to establish a Rare Disease Advisory Council (RDAC)
Published: Mar 18, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 13 additional patient organizations submit letter expressing continued support for Medicaid expansion in Arkansas
Published: Mar 17, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD, American Heart Association, and 50 other Patient Organizations Sign on to Letter to House 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