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, along with the ALS Association, the Alliance for Connected Care and 235 other patient organizations call on governors to protect access to telehealth
Published: Oct 28, 2021
Tagged in: Telehealth
NORD and 12 other patient organizations submit a letter to the Wisconsin Legislature asking for their support to create an RDAC
Published: Oct 21, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins other patient advocacy organizations in comments on the Colorado Standard Option Health Benefit Plan
Published: Oct 20, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 16 patient organizations submit comments on Montana’s Section 1115 waiver application
Published: Oct 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 13 patient organizations submit comments on Florida’s Section 1115 waiver application
Published: Oct 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 15 patient organizations submit comments on on the Arkansas Health and Opportunity for Me (ARHOME) demonstration
Published: Oct 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and fifteen patient organizations submit comments to the Administration on protecting patients from surprise medical bills
Published: Oct 18, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD and 66 other patient organizations submit a letter to the New York Governor urging support for Senate Bill 4111/Assembly Bill 4668, legislation to prohibit non-medical switching
Published: Oct 13, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 20 coalition partners send a letter to President Biden urging him to support a national paid family and medical leave program in the budget reconciliation package
Published: Oct 12, 2021
Tagged in: Paid Leave
NORD and 20 coalition partners send a letter to Congressional Leadership urging them to support a national paid family and medical leave program in the budget reconciliation package
Published: Oct 12, 2021
Tagged in: Paid Leave
NORD and 20 coalition partners send a letter to Senator Manchin urging him to support a national paid family and medical leave program in the budget reconciliation package
Published: Oct 12, 2021
Tagged in: Paid Leave
NORD and 31 patient organizations urge Congress to close the Medicaid coverage gap and extend enhanced APTCs as part of the Build Back Better Act
Published: Oct 12, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and coalition partners release the 2022 Medicare Part D Open Enrollment Guide
Published: Oct 8, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 16 other patient organizations submit a letter to Arizona Governor urging support to create a Rare Disease Advisory Council
Published: Oct 8, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD testimony to the Ohio Senate Health Committee in support of House Bill 122 that would would make permanent provisions related to telehealth
Published: Sep 29, 2021
Tagged in: Telehealth
NORD submits comments in response to NIH Request for Information: Developing Consent Language for Future Use of Data and Biospecimens
Published: Sep 29, 2021
Tagged in: Access to Diagnostics
Newborn Screening
Research
NORD joins a one pager with other advocacy organizations on Minnesota SF 365/ HF 633 to help patients manage out-of-pocket costs
Published: Sep 28, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and coalition partners urge NY policymakers to ensure that patients who remain eligible for Medicaid coverage maintain their access to care at the end of the COVID-19 public health emergency
Published: Sep 23, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 86 other organizations ask for the removal of provisions related to the Orphan Drug Tax Credit in the House version of the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD and 86 other organizations oppose the Senate including changes to the Orphan Drug Tax Credit in the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD letter to CA Governor Newsom in support of California AB 347, step therapy reform legislation
Published: Sep 17, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins a statement with other patient advocacy groups commending the House Energy and Commerce and Ways and Means Committees for expanding access to adequate and affordable health care in the reconciliation legislation
Published: Sep 17, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD, MDA, and FARA letter to the Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22
Published: Sep 15, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
NORD joins a one pager with other organizations on paid family and medical leave
Published: Sep 15, 2021
Tagged in: Paid Leave
NORD letter to House Ways & Means Committee opposing Section 138141 of the Build Back Better Act
Published: Sep 13, 2021
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Act
Orphan Drug Tax Credit
NORD and other patient advocacy organizations ask Congressional leadership to make the enhanced advanced premium tax credits permanent and address the Medicaid coverage gap in the reconciliation package
Published: Sep 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to CMS on the proposed removal of the National Coverage Decision 180.2 made on July 11, 1984 for patients requiring enteral and parenteral medical nutrition
Published: Sep 10, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
NORD joins comments with other patient advocacy organizations on the Special Terms and Conditions approved on January, 8 2021 for the TennCare III demonstration wavier
Published: Sep 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD joins a statement commending the House Ways and Means Committee for including details for a national paid family and medical leave program as part of the budget reconciliation package
Published: Sep 9, 2021
Tagged in: Paid Leave
NORD and 31 other patient and health care organizations submit a letter of support to California Governor urging him to sign SB 247 into law, to establish an RDAC
Published: Sep 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins patient advocacy organizations in urging Congress to establish an out-of-pocket (OOP) cap for Medicare Part D to limit the amount Medicare beneficiaries have to pay for covered prescription drugs
Published: Sep 9, 2021
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins other patient advocacy organizations in comments on the No Surprises Act interim final rule
Published: Sep 7, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD and seventeen coalition partners submit comments on the Texas Healthcare Transformation and Quality Improvement Program – Extension Request Demonstration
Published: Aug 30, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 30 other patient organizations submit a letter of support to the California Assembly in support of Senate Bill 247 to establish an RDAC
Published: Aug 30, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins a letter to Congressional leadership to support a national paid family and medical leave program
Published: Aug 23, 2021
Tagged in: Paid Leave
NORD joins a comment letter to the WA State Office of the Insurance Commissioner on the draft for health care sharing ministries
Published: Aug 17, 2021
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
NORD joins comments to CMS in response to the No Surprises Act
Published: Aug 12, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD appropriations priorities for Fiscal Year 2022-chart
Published: Aug 10, 2021
Tagged in: Appropriations
NORD joins a letter with several other patient organizations asking House and Senate leadership to prioritize making the advance premium tax credits permanent in the reconciliation package
Published: Aug 3, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD joins a letter with other patient organizations to Chairwoman Murray and Chairman Pallone regarding their request for information to design a public health insurance option
Published: Jul 30, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins a paid medical leave principle document with several other patient advocacy organizations
Published: Jul 30, 2021
Tagged in: Paid Leave
NORD Appropriations Priorities for Fiscal Year 2022
Published: Jul 29, 2021
Tagged in: Appropriations
NORD joins comments to the Administration on the Improving Health Insurance Markets Proposed Rule, which addresses some of the policies in the 2022 NBPP and strengthens the ACA marketplaces
Published: Jul 28, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits testimony to the Massachusetts Joint Committee on Financial Services in support of House Bill 1153 , which would require health insurance coverage for certain medically necessary services related to functional repair or restoration of craniofacial disorders.
Published: Jul 27, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD joins letter to Congressional leadership along with 54 patient organizations asking that provisions to improve medication access in emergencies is included in upcoming pandemic preparedness legislation.
Published: Jul 27, 2021
Tagged in: COVID-19
NORD joins a letter to Congressional Leaders with over 400 organizations supporting permanent telehealth Medicare reforms
Published: Jul 26, 2021
Tagged in: Telehealth
NORD Submits Comments to Reps. DeGette and Upton on 21st Century Cures 2.0 Discussion Draft
Published: Jul 26, 2021
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
COVID-19
NORD joins several patient organizations in a statement applauding the Biden administration rule implementing the No Surprises Act
Published: Jul 14, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD submits testimony to the Massachusetts Joint Committee on Health Care Financing in support of Senate Bill 756 and House Bill 1311 , step therapy reform legislation
Published: Jul 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 19 patient organizations submit comments on the progress of the TennCare III demonstration
Published: Jul 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
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