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 and 12 other patient organizations submit letter of support to the Wisconsin Assembly Committee on Health urging them to support a Rare Disease Advisory Council
Published: Jan 11, 2022
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 19 other patient organizations submit comments to the federal government regarding the harmful Georgia Access Model 1332 waiver
Published: Jan 7, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits comments to the state of Oregon on the rare disease impact of proposals included in the draft 1115 Demonstration Waiver for the Oregon Health Plan.
Published: Jan 6, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 14 patient organizations submit comments on MN’s mandated health benefit review pertaining to copayments for prescription drugs
Published: Dec 9, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD and 12 other patient organizations submit a letter to the MI Senate Health Policy and Human Services Committee urging them to support the creation of a Rare Disease Advisory Council
Published: Dec 7, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and 20 patient organizations submit comments on rulemaking to implement the No Surprises Act
Published: Dec 6, 2021
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD joins Friends of Cancer Research and 50 other organizations in letter to the Senate supporting the nomination of Dr. Robert Califf to be Commissioner of the FDA
Published: Dec 1, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD and more than 140 organizations submit letter of support for H.R. 5801, the ‘HELP Copays Act’
Published: Nov 29, 2021
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD submits comments to FDA on draft guidance: Benefit-Risk Assessment for New Drug and Biological Products
Published: Nov 22, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD and seventeen organizations submit comments on the Proposed Repeal of HHS Rules on Guidance, Enforcement, and Adjudication Procedures
Published: Nov 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
NORD and 26 patient groups praise House passage of legislation that extends quality, affordable health coverage to millions
Published: Nov 19, 2021
Tagged in: Access to Affordable, Adequate Coverage
COVID-19
Medicare Home Infusion
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
Paid Leave
NORD joins the NW Rare Disease Coalition and 21 other organizations in letter to the Washington Legislature asking for their support to create an RDAC
Published: Nov 17, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD and coalition partners submit comments on Colorado’s 1332 state innovation waiver application to implement the Colorado Option program
Published: Nov 15, 2021
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD joins other patient advocacy organizations in comments to the Colorado Division of Insurance Commissioner on the Colorado Standard Option Health Benefit Plan
Published: Nov 12, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD, MDA, and FARA letter to House and Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22
Published: Nov 10, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
Appropriations
Ensuring Adequate Funding for NIH
NORD letter of support to the Michigan Speaker of the House in support of House Bill 4654, legislation to establish a Rare Disease Advisory Council (RDAC)
Published: Nov 9, 2021
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins with American Academy of Pediatrics and 18 organizations in letter to Congressional Appropriators to support the Pediatric Device Consortia Grant Program at FDA
Published: Nov 8, 2021
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Appropriations
NORD and thirty patient advocacy organizations submit comments on the Department of Health and Human Services strategic plan for Fiscal Years 2022-2026
Published: Nov 7, 2021
Tagged in: Access to Affordable, Adequate Coverage
Statement from NORD and members of the Patients and Caregivers Paid Leave Coalition applauding House lawmakers for taking action to amend the Build Back Better legislation to include the creation of a paid medical and family leave program
Published: Nov 5, 2021
Tagged in: Paid Leave
NORD and 8 patient organizations send letter to CMS supporting standardized health plan options in the Health Insurance Marketplaces
Published: Nov 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 23 patient organizations send letter to members of the Ohio Senate urging the rapid passage of HB 122
Published: Nov 3, 2021
Tagged in: Telehealth
NORD comments on Prescription Drug User Fee Act VII Commitment Letter
Published: Oct 28, 2021
Tagged in: Advancing Rare Disease Research and Regulatory Science
User Fee Act
NORD joins coalition statement expressing disappointment over the omission of a paid leave program from the latest version of the Build Back Better Act
Published: Oct 28, 2021
Tagged in: Paid Leave
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