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 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 and 23 other patient organizations submit recommendations to CMS on health equity issues related to the COVID-19 Public Health Emergency
Published: Nov 4, 2022
Tagged in: COVID-19
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins other patient organizations to submit comments on the “Streamlining the Medicaid, Children’s Health Insurance Program, and Basic Health Program Application, Eligibility Determination, Enrollment, and Renewal Processes Proposed Rule”
Published: Nov 4, 2022
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins other patient organizations in opposing the Professional Employer Organization Registration Act
Published: Oct 27, 2022
Tagged in: Affordable Care Act
NORD submits letter of support to the PA Majority Leader in support of Senate Bill 225 on step therapy reform
Published: Oct 24, 2022
Tagged in: Access to Affordable, Adequate Coverage
NORD joins 24 other patient organizations submit comments on the Section 1557 Proposed rule of the Affordable Care Act
Published: Oct 14, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 21 patient organizations praise “Family Glitch” fix
Published: Oct 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and other patient organizations submit comments on Tennessee’s TennCare program amendment
Published: Oct 7, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and partners release the 2023 Medicare Part D open enrollment guide
Published: Oct 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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 other patient organizations urge the Supreme Court to protect patient rights under Medicaid
Published: Sep 23, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins 20 organizations to send letter of support on patient protections and consumer-focused policies to Secretary Becerra
Published: Sep 13, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD and 109 organizations send letter to Senate Finance and House Energy and Commerce in support of the Accelerating Kids’ Access to Care Act
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Out-of-State Care for Children on Medicaid
NORD and other patient organizations respond to ruling in Braidwood v Becerra
Published: Sep 8, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD letter to CA Governor Newsom in support of California AB 1880, utilization management reform legislation
Published: Sep 1, 2022
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD and 11 organizations submit comments to Secretary Becerra on the Washington Medicaid Transformation Project Waiver Renewal
Published: Aug 31, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 15 organizations send feedback on the Tennessee TennCare Medicaid program
Published: Aug 19, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD and 50 organizations urge Secretary Becerra to strengthen current 1115 regulations
Published: Aug 17, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD statement on the passage of the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 27 other organization applaud major health care improvements under the Inflation Reduction Act
Published: Aug 12, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 26 organizations send letter to Congressional leadership to applaud expansion of APTC within the Inflation Reduction Act
Published: Aug 5, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Appropriations
NORD and 34 other organizations submit feedback on Medicare Part D in the Inflation Reduction Act of 2022
Published: Aug 4, 2022
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD and 23 organizations release statement on Kelley v Beccerra case that threatens preventative services
Published: Jul 22, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD sends letter urging President Biden and Vice President Harris to include medical nutrition as a topic of discussion for the September 2022 Conference on Hunger, Nutrition, and Health.
Published: Jul 11, 2022
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
Medical Nutrition
NORD and 12 organizations send comment letter to Secretary Yellen and Secretary Becerra on Minnesota’s Section 1332 State Innovation Waiver Extension Application
Published: Jun 30, 2022
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
Section 1332 Waivers
