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 Issues Position Statement: State Implementation of Medicaid Community Engagement Requirements (H.R.1)
Published: May 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Comments on FDA’s Proposed Plausible Mechanism Framework Guidance
Published: Apr 27, 2026
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Genetic Testing
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
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 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
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)
Please complete this form to access the requested resource.
