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 policy@rarediseases.org if you have questions or need additional information.
NORD Joins 15 Leading Patient Advocacy Groups in Support of Massachusetts’ 1115 Demonstration Waiver Request
Published: Nov 29, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD Joins Leading Patient Advocacy Groups in Support of New York Section 1332 Waiver Extension Updates
Published: Nov 29, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 110 organizations in urging Congressional Leadership to pass comprehensive PBM reform legislation with the inclusion of the Safe Step Act in the final package
Published: Nov 8, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD Joins Dozens of Patient Organizations in Support of Coverage for Biomarker Testing in Pennsylvania
Published: Nov 7, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
NORD submits comments to the Special Committee on Aging regarding the Committee’s October 26, 2023 hearing “Unlocking Hope: Access to Therapies for People with Rare, Progressive, and Serious Diseases”
Published: Nov 2, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD joins numerous organizations in urging Congress to the enact the 2024 Defense Appropriations Act and to ensure full funding levels for the Defense Health Research Programs, including the Congressionally Directed Medical Research Programs (CDMRP)
Published: Oct 27, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD sends comments to the Maryland Prescription Drug Affordability Board regarding the new proposed chapter of regulation for the Cost Review Study Process
Published: Oct 23, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD joins leading patient organizations in submitting comments on the Mental Health Parity and Addiction Equity Act (MHPAEA) proposed rule
Published: Oct 16, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Public Health
NORD joins key patient advocacy organizations in submitting feedback to the House Budget Committee Health Care Task Force request for information (RFI)
Published: Oct 15, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
NORD joins leading patient organizations in letter to CMS urging the agency to protect patient access to Medicaid
Published: Oct 10, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD submits comments on Docket No. FDA-2022-D-2629-0002- “Postmarketing Approaches to Obtain Data on Populations Underrepresented in Clinical Trials for Drugs and Biological Products”
Published: Oct 10, 2023
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
NORD and the All Copays Count Coalition sends a letter of support regarding the U.S. District Court Decision on 2021 Notice of Benefit and Payment Parameters Final Rule
Published: Oct 6, 2023
Tagged in: Access to Affordable Medicines
NORD joins 19 patient advocacy organizations in a statement for the record regarding “Reduced Care for Patients: Fallout from Flawed Implementation of the Surprise Medical Billing Protections
Published: Oct 3, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD submits recommendations to the Michigan Senate Committee on Finance, Insurance, and Consumer Protection regarding changes to SB 483 (Camilleri) and its companion bills, SB 484 (Klinefelt) and SB 485 (McDonald Rivet)
Published: Sep 20, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD joins leading patient advocacy organizations in submitting comments to CMS on implementation of the Medicare Prescription Payment Plan
Published: Sep 20, 2023
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD joins leading patient organizations in providing comments to CMS on the Medicare Prescription Payment Plan
Published: Sep 20, 2023
Tagged in: Access to Affordable Medicines
Copay Assistance
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Joins Patient Advocacy Organizations in Support of California’s SB 496 Regarding Biomarker Testing
Published: Sep 15, 2023
Tagged in: Access to Innovative Medicines and Therapies
NORD Requests a meeting with the Colorado Prescription Drug Affordability Board to assist in patient involvement
Published: Sep 12, 2023
Tagged in: Access to Innovative Medicines and Therapies
Out of Pocket Prescription Drug Costs
NORD joins patient advocacy organizations in submitting comments for the Request for Information Regarding Medical Payment Products (CMS–2023
Published: Sep 11, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD joins 27 patient advocacy organizations in submitting comments to regarding Short-Term, Limited-Duration Insurance; Independent, Noncoordinated Excepted Benefits Coverage; Level-Funded Plan Arrangements; and Tax Treatment of Certain Accident and Health Insurance (CMS-9904-P)
Published: Sep 11, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD joins leading patient advocacy organizations in providing support for Washington’s Medicaid Transformation Project Amendment
Published: Sep 8, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD signs on to a letter regarding the Commonwealth Essential Health Benefits Benchmark Plan—Public Comment Period; Notice 2023-14
Published: Sep 1, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
NORD joins patient advocacy organizations in a letter to the U.S. Department of Labor regarding Alternative Funding Programs
Published: Sep 1, 2023
Tagged in: Public Health
NORD submits comments on CMS National Coverage Analysis Evidence Review and Coverage with Evidence Development Guidelines
Published: Aug 21, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD signs on to a letter of support led by the NIAMS Coalition for the NIH Clinical Trial Diversity Act (H.R. 3505)
Published: Aug 16, 2023
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Clinical Trials
NORD joins the Amicus Brief from The Leukemia & Lymphoma Society for the Haller v HHS case
Published: Aug 8, 2023
NORD submits comments to Docket No. FDA-2022-D-2870 for “Decentralized Clinical Trials for Drugs, Biological Products, and Devices”
Published: Aug 1, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD sends a letter to the Colorado Prescription Drug Affordability Advisory Council with recommendations to address prescription drug costs
Published: Jul 28, 2023
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
NORD joins 34 patient advocacy organizations in urging the Biden administration to take immediate steps to protect patients’ Medicaid coverage
Published: Jul 28, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 12 national patient advocacy organizations submit a letter to the Senate Finance Committee regarding the Modernizing & Ensuring PBM Accountability Act
Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD signs on to a letter to the Senate Appropriations Committee regarding USPSTF modernization and FY24 funding
Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD signs on to a letter to the House Appropriations Committee regarding USPSTF modernization and FY24 funding
Published: Jul 26, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Delaware Enacts Law to Address Needs of Rare Disease Patients and Families
Published: Jul 26, 2023
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments to CMS on proposed changes to the Medicaid Drug Rebate Program
Published: Jul 25, 2023
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 21 patient organizations in submitting comments to the Senate HELP committee on including protections for individuals with chronic conditions in the Pandemic and All-Hazards Preparedness Act (PAHPA) reauthorization
Published: Jul 21, 2023
Tagged in: COVID-19
NORD joins 215 organizations and Children’s Hospitals in encouraging members of Congress to support the Accelerating Kids’ Access to Care Act
Published: Jul 20, 2023
Tagged in: Access to Affordable, Adequate Coverage
Out-of-State Care for Children on Medicaid
NORD and 80+ patient advocacy and provider organizations in the All Copays Count Coalition (ACCC) request the Senate to include HELP Copays Act in any PBM reform package that comes to vote
Published: Jul 19, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD joins leading patient and provider organizations in urging NY Governor Hochul to promptly sign S1196
Published: Jul 17, 2023
Tagged in: Access to Innovative Medicines and Therapies
NORD joins 64 organizations in urging Ohio House of Representatives to move HB24 forward without the addition of unnecessary medical necessity criteria and an arbitrary monetary cap on testing costs
Published: Jul 17, 2023
NORD joins other 19 other patient organizations in providing comments to CMS on Arkansas’ ARHOME Section 1115 Amendment
Published: Jul 14, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD submits comments on “Pediatric Drug Development: Regulatory Considerations — Complying With the Pediatric Research Equity Act and Qualifying for Pediatric Exclusivity Under the Best Pharmaceuticals for Children Act”
Published: Jul 13, 2023
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD joins 30 other patient organizations in opposition to H.R. 824, the Telehealth Benefit Expansion for Workers Act of 2023
Published: Jul 12, 2023
Tagged in: Telehealth
NORD joins 35 other patient organizations in submitting comments to White House leadership conveying concerns about nationwide losses in Medicaid coverage
Published: Jul 10, 2023
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 36 patient organizations applaud the Biden administration’s proposed rule to protect patients from short-term health plans
Published: Jul 7, 2023
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD provides comments regarding Docket No. FDA-2023-D-0026- “Patient-Focused Drug Development: Incorporating Clinical Outcome Assessments Into Endpoints for Regulatory Decision-Making”
Published: Jul 5, 2023
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Clinical Trials
NORD joins leading patient organizations in providing comments on New York’s Section 1332 State Innovation Waiver
Published: Jul 5, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Section 1332 Waivers
Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community
Published: Jun 30, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
Medicare, Medicaid, and Private Health Insurance Coverage
Orphan Drug Act
Research
NORD submits comments to the Institute for Clinical and Economic Review (ICER) on proposed revisions to its Value Assessment Framework
Published: Jun 30, 2023
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD and leading patient organizations submit comments to CMS on the Medicaid and Children’s Health Insurance Program (CHIP) Managed Care Access Proposed Rule
Published: Jun 29, 2023
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 25 other patient organizations in submitting comments to CMS on the Medicaid Access Proposed Rule
Published: Jun 29, 2023
Tagged in: Access to Affordable, Adequate Coverage
