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
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
Coalition letter to Congressional Leaders, urging policymakers to provide support to the charitable nonprofit sector in future COVID19 legislation.
Published: Jul 13, 2020
Tagged in: COVID-19
NORD one-pager on Rare Disease Advisory Councils (RDACs).
Published: Jul 9, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter to Massachusetts Health Policy Commission regarding copay assistance.
Published: Jul 2, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD comments opposing Florida’s request to extend its current Medical Managed Assistance 1115 demonstration, and urging the state to reinstate retroactive eligibility for beneficiaries.
Published: Jun 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Example of a coalition letter sent to all states urging them to take action on the copay accumulator issue in light of the final NBPP rule.
Published: Jun 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Coalition statement on the House passage of the Patient Protection and Affordable Care Act Enhancement Act.
Published: Jun 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Letter from NORD and coalition partners urging lawmakers to direct more COVID-19 testing into underserved communities.
Published: Jun 29, 2020
Tagged in: Access to Care
COVID-19
NORD joined with over 300 stakeholders in support of improving telehealth access during and after the COVID-19 pandemic.
Published: Jun 29, 2020
Tagged in: COVID-19
Telehealth
NORD letter to Governor Lee of Tennessee urging him to extend parts of Executive Order #36.
Published: Jun 26, 2020
Tagged in: Access to Care
COVID-19
Telehealth
NORD comments in responses to the Committee on Health, Education, Labor and Pensions (HELP) “Preparing for the Next Pandemic” white paper.
Published: Jun 26, 2020
Tagged in: COVID-19
Telehealth
Coalition comments in responses to the Committee on Health, Education, Labor and Pensions (HELP) “Preparing for the Next Pandemic” white paper.
Published: Jun 26, 2020
Tagged in: Access to Care
COVID-19
NORD comments to CMS opposing Oklahoma’s application for a Section 1115 waiver containing numerous policies that jeopardize patients’ access to care in the Medicaid program.
Published: Jun 25, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition comments urging CMS to reject Oklahoma application for a Section 1115 waiver containing numerous policies that jeopardize patients’ access to care in the Medicaid program.
Published: Jun 24, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 13 national organizations representing patients facing serious chronic medical conditions released a statement in support of an August 4 ballot initiative that would provide more Missourians with access to healthcare coverage through Medicaid
Published: Jun 22, 2020
NORD comments to the Utah Department of Health in support of the state’s Section 1115 Demonstration Amendment to increase the premium reimbursement amount for Utah’s Premium Partnership for Health Insurance (UPP) program
Published: Jun 17, 2020
NORD led coalition comments to Utah legislative leadership in support of the Utah Rare Disease Advisory Council
Published: Jun 15, 2020
NORD and 28 patient and consumer groups issued a statement opposing changes made to Section 1557 of the Affordable Care Act that remove explicit protections against discrimination of patients by providers and institutions
Published: Jun 15, 2020
NORD joined coalition letters to the New York Assembly in support of A8246/S6303 to ensure all prescription copayments count towards patient cost-sharing obligations
Published: Jun 15, 2020
NORD joined coalition letters to the New York Senate in support of A8246/S6303 to ensure all prescription copayments count towards patient cost-sharing obligations
Published: Jun 15, 2020
Coalition comments to CMS in support of New Hampshire’s efforts to establish a reinsurance program
Published: Jun 12, 2020
NORD testimony to the Ohio Senate Health, Human Services, and Medicaid Committee in support of House Bill 412 to create a Rare Disease Advisory Council
Published: Jun 1, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition letter asking the Centers for Medicare and Medicaid Services to provide flexibility to Medicare Advantage and Prescription Drug Plan sponsors to waive the use of step therapy requirements during the COVID-19 pandemic
Published: May 29, 2020
Tagged in: Access to Care
COVID-19
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