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 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
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
