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
Press release regarding coalition letter to governors on the impact of COVID-19 on voters with rare, serious and chronic diseases.
Published: Oct 9, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to President Trump regarding the September 24 Executive Orders.
Published: Oct 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Surprise Medical Billing
NORD letter to the Michigan House Ways and Means Committee in support of House Bill 5944, a bill regarding prescription drug copay assistance.
Published: Oct 6, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Comment letter on the telehealth provisions of the FY 2021 Medicare Physician Fee Schedule
Published: Oct 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Telehealth
Letter to NY Governor Cuomo, Chair of the National Governors Association, on the impact of COVID-19 on Voters with Rare, Serious and Chronic Diseases.
Published: Oct 2, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to House leadership in support of H.R. 7647, a bill regarding copay accumulators.
Published: Sep 29, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD joins ad in support of government decisions on COVID-19 being based solely on scientific evidence.
Published: Sep 25, 2020
Tagged in: COVID-19
Coalition letter in support of Michigan House Bill 5944, a bill regarding copay accumulators.
Published: Sep 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition press release to call for government decisions to be based solely on evidence, not politics
Published: Sep 22, 2020
Tagged in: COVID-19
Coalition one-pager on Michigan copay accumulators.
Published: Sep 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition comments to the Department of Health and Human Services and Department of the Treasury regarding Georgia’s 1332 waiver application.
Published: Sep 18, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition comments on HHS proposed guidance practices
Published: Sep 16, 2020
Tagged in: Access to Affordable, Adequate Coverage
Coalition comments opposing Florida’s request to extend its current Medical Managed Assistance 1115 demonstration.
Published: Sep 14, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to the Department of Health and Human Services and Congressional Leaders outlining coalition telehealth principles.
Published: Sep 11, 2020
Tagged in: Telehealth
Coalition Letter to House Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition Letter to Senate Appropriations Committee on Support for Newborn Screening Program
Published: Sep 9, 2020
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
Coalition letter to Pennsylvania legislators in support of House Bill 1194, a bill regarding prior authorization and step therapy.
Published: Aug 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter to Arizona Governor Ducey regarding Senate Bill 1397, a bill recently signed into law to protect patients with pre-existing conditions.
Published: Aug 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments to Arizona Governor Ducey regarding their crisis standards of care plan.
Published: Aug 31, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition comments to Texas Governor Abbott regarding the development of crisis standards of care guidelines.
Published: Aug 31, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition comments to Florida Governor DeSantis regarding the development of crisis standards of care guidelines.
Published: Aug 24, 2020
Tagged in: Anti-discrimination
COVID-19
Coalition letter to the National Council of Insurance Legislators on the Short Term Limited Duration Insurance Model Act.
Published: Aug 24, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD comments on Reauthorization of the Prescription Drug User Fee Act
Published: Aug 21, 2020
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
Coalition letter to Nevada Health Committee Chair in support of step therapy reform.
Published: Aug 19, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition comments to the WA Insurance Commissioner on prescription drug utilization reform.
Published: Aug 17, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition Comments to the Administration on the proposed Grandfathered Plans rule.
Published: Aug 14, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD’s letter of endorsement for H.R. 7078, the Evaluating Disparities and Outcomes of Telehealth During the COVID-19 Emergency Act.
Published: Aug 13, 2020
Tagged in: COVID-19
Telehealth
NORD’s letter of endorsement for S. 4421, the Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act.
Published: Aug 13, 2020
Tagged in: COVID-19
Telehealth
Coalition Comments Regarding New Mexico’s Short-Term, Limited-Duration Plans Proposed Rule.
Published: Aug 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition Comments Regarding New Mexico’s Excepted Benefits Proposed Rule.
Published: Aug 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to the Louisiana Federal Congressional Delegation to express support for federal step therapy reform legislation.
Published: Aug 11, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition letter in response to the Internal Revenue Service proposed regulations that would treat payments made to health care sharing ministries and direct primary care arrangements as medical expenses under IRS code.
Published: Aug 10, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition comments on New Hampshire’s Crisis Standards of Care Clinical Guidelines.
Published: Aug 10, 2020
Tagged in: Anti-discrimination
COVID-19
Letter to Governor Inslee of WA on workplace protections for rare disease patients during COVID19
Published: Aug 7, 2020
Tagged in: COVID-19
Coalition statement applauding the passage of Medicaid expansion in Missouri
Published: Aug 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Letter to Massachusetts legislators urging the state to establish a Rare Disease Advisory Council
Published: Aug 5, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Congress in support of the Protecting Access to Post-COVID-19 Telehealth Act of 2020 (HR 7663)
Published: Aug 3, 2020
Tagged in: COVID-19
Telehealth
NORD submits comments to FDA on Request for Information on Rare Disease Clinical Trial Networks
Published: Jul 31, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Rare Disease Clinical Trials
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
Coalition statement calling on Congress to end surprise medical billing.
Published: Jul 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD letter of support for the adoption of amendment #71 in House Bill 4888 in Massachusetts to the House Majority Leader, Ways and Means Chair, and Joint Health Care Financing Chair.
Published: Jul 28, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Congressional leaders on COVID-19 legislative priorities for patients.
Published: Jul 28, 2020
Tagged in: Access to Care
COVID-19
Paid Leave
Telehealth
NORD submits comments on FDA Draft Guidance on Interpreting Sameness for Gene Therapy Products Under the Orphan Drug Regulations
Published: Jul 28, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Orphan Drug Act
NORD comments to Georgia regarding the state’s Section 1332 waiver application.
Published: Jul 23, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Patient group letter urging HHS to take action on pending Section 1115 demonstration waivers to address racial disparities.
Published: Jul 22, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to CMS regarding proposed changes to price reporting requirements under the Medicaid Drug Rebate Program.
Published: Jul 21, 2020
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD-led patient advocacy group sign-on letter to the Massachusetts House Ways and Means Committee in Support of House Bill 4268, an Act to create a Rare Disease Advisory Council.
Published: Jul 20, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Georgia Governor Kemp regarding the state’s Section 1332 waiver application.
Published: Jul 17, 2020
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD letter to the Massachusetts House Ways and Means committee in support of H4268, to create a Rare Disease Advisory Council.
Published: Jul 14, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Comment Letter from NORD on the Hospital Inpatient Prospective Payment Systems for Acute Care Hospitals and Long Term Care Hospital Prospective Payment System and Proposed Policy Changes and Fiscal Year 2021 Rates.
Published: Jul 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage