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 Joins Leading Patient Groups in Letter to 119th Congress in Support of PBM Reform
Published: Feb 5, 2025
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Out of Pocket Prescription Drug Costs
NORD Submits Comments to CMS in Response to ICR on MDPNP Written Submissions
Published: Dec 23, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Signs-On to One-Pager in Support of Virginia SB376/HB946 Relating to Patient Out-of-Pocket Costs
Published: Sep 9, 2024
Tagged in: Out of Pocket Prescription Drug Costs
NORD Submits Comments to CMS on Medicare Drug Price Negotiation Draft Guidance
Published: Jul 2, 2024
Tagged in: Access to Affordable, Adequate Coverage
Federal Drug Pricing Legislation in the 116th Congress
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD joins leading patient groups in submitting comments to CMS on M3P model documents
Published: Apr 29, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Sends Comments Regarding Colorado SB24-203
Published: Apr 26, 2024
Tagged in: Out of Pocket Prescription Drug Costs
Rare Disease Advisory Councils (RDACs)
NORD submits comments to CMS in response to the Medicare Prescription Payment Plan (MPPP) Draft Guidance – Part Two
Published: Mar 15, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Joins Patient Organizations in Support of New Jersey A1825 Establishing Step Therapy Protocols
Published: Mar 13, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Utilization Management
NORD submits comments in response to Senator Cassidy’s request for information on “Improving Americans’ Access to Gene Therapies”
Published: Jan 22, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
Out-of-State Care for Children on Medicaid
Value-based Pricing Assessments
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 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 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 sends letter to CMS supporting Part D Out-of-Pocket Caps
Published: Jun 5, 2023
Tagged in: Out of Pocket Prescription Drug Costs
NORD and other patient organizations urge CMS to host listening sessions for Inflation Reduction Act implementation
Published: Mar 27, 2023
Tagged in: Access to Affordable Medicines
Out of Pocket Prescription Drug Costs
NORD sends letter to Colorado Prescription Drug Affordability Board regarding Senate Bill 21-175
Published: Mar 23, 2023
Tagged in: Out of Pocket Prescription Drug Costs
NORD signs on to letter encouraging the expansion of New York’s 1332 Essential Plan
Published: Mar 10, 2023
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Out of Pocket Prescription Drug Costs
NORD joins 8 patient organizations to improve coverage affordability in New Mexico
Published: Nov 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD sends letter with the All Copays Count Coalition to CMS to address copay accumulator adjustment policies in the 2024 Notice of Benefit and Payment Parameters
Published: Sep 29, 2022
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Out of Pocket Prescription Drug Costs
NORD and 13 patient organizations urge Congressional leadership to take action to address the high out-of-pocket costs in the Medicare Part D program
Published: Mar 15, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
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 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 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 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 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 joins other patient groups to the Minnesota House and Senate Conference Committee in support of adopting Article 5, Section 7 of the fourth engrossment of HF 2128 to create a copay benefit option for individual and small-group coverage
Published: May 4, 2021
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs