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 commits to advocating for health equity
Published: Jan 2, 2023
Tagged in: Access to Care
Anti-discrimination
NORD joins letter with 22 patient organizations asking Secretary Becerra to establish a National Directory of Healthcare Providers and Services
Published: Dec 6, 2022
Tagged in: Access to Care
Expanded Access
The Administration's Blueprint
NORD joins coalition letter urging the federal government to rescind rules that weaken the beneficiary protections in the Families First Coronavirus Response Act (FFCRA)
Published: Apr 10, 2021
Tagged in: Access to Care
COVID-19
CDC Response to NORD, ALS Association, Muscular Dystrophy Association, and Cystic Fibrosis Foundation Letter to CDC Director, Dr. Walensky, Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Apr 9, 2021
Tagged in: Access to Care
COVID-19
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation Letter to the Advisory Committee on Immunization Practices (ACIP), Requesting Additional Guidance to Ensure Rare Disease Patients Have Access to the COVID-19 Vaccine
Published: Mar 1, 2021
Tagged in: Access to Care
COVID-19
NORD, the ALS Association, Muscular Dystrophy Association and Cystic Fibrosis Foundation letter to CDC Director, Dr. Rochelle Walensky, requesting additional guidance from CDC to ensure rare disease patients have access to the COVID-19 vaccine
Published: Feb 17, 2021
Tagged in: Access to Care
COVID-19
Coalition Statement in Support of Medicaid Coverage Provisions in COVID-19 Relief Package
Published: Feb 11, 2021
Tagged in: Access to Care
COVID-19
Coalition Statement to the House Ways and Means committee on COVID-19 relief measures
Published: Feb 10, 2021
Tagged in: Access to Care
COVID-19
Coalition comments on changes to Medicaid maintenance of effort requirements that could lead to gaps in coverage
Published: Dec 18, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to President-Elect Biden outlining recommendations to ensure affordable and accessible health coverage during the COVID-19 pandemic.
Published: Nov 23, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Congressional leaders on COVID-19 legislative priorities for patients.
Published: Jul 28, 2020
Tagged in: Access to Care
COVID-19
Paid Leave
Telehealth
Letter from NORD and coalition partners urging lawmakers to direct more COVID-19 testing into underserved communities.
Published: Jun 29, 2020
Tagged in: Access to Care
COVID-19
NORD letter to Governor Lee of Tennessee urging him to extend parts of Executive Order #36.
Published: Jun 26, 2020
Tagged in: Access to Care
COVID-19
Telehealth
Coalition comments in responses to the Committee on Health, Education, Labor and Pensions (HELP) “Preparing for the Next Pandemic” white paper.
Published: Jun 26, 2020
Tagged in: Access to Care
COVID-19
Coalition letter asking the Centers for Medicare and Medicaid Services to provide flexibility to Medicare Advantage and Prescription Drug Plan sponsors to waive the use of step therapy requirements during the COVID-19 pandemic
Published: May 29, 2020
Tagged in: Access to Care
COVID-19
Coalition letter urging Congressional leadership to strengthen the Medicaid program in future legislation to address the COVID-19 pandemic
Published: May 26, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Louisiana Insurance Commissioner in support of resuming LDI Rule 40 to protect against the loss of health coverage due to inability to pay premiums for 90 days after the end of Louisiana’s COVID-19 emergency declaration
Published: May 19, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to the South Dakota Federal Congressional Delegation to express support for federal step therapy reform legislation
Published: May 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Utilization Management
Coalition statement of support for H.R. 6514, the Worker Health Coverage Protection Act
Published: Apr 24, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Congressional leadership urging guardrails on the use of step therapy protocols in Medicare and Medicaid during COVID-19
Published: Apr 20, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Utilization Management
Coalition letter to Congress to further strengthen health insurance coverage, affordability, and accessibility in the next COVID-19 relief package
Published: Apr 14, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Kentucky Representative Bentley in support of the state taking the state taking executive action to ban copay accumulator programs during COVID-19
Published: Apr 9, 2020
Tagged in: Access to Care
COVID-19
Coalition letter to Congressional leaders to enact legislation to permanently end all surprise medical billing when seeking treatment for COVID-19 and other medical conditions
Published: Apr 8, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
COVID-19
Surprise Medical Billing
Coalition letter to Ohio Representative Manchester in support of the state taking executive action to ban copay accumulator programs during COVID-19
Published: Apr 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Access to Care
Copay Assistance
COVID-19
Coalition letter in support of including the Protecting Seniors Through Immunization Act in the next COVID-19 response legislative package
Published: Apr 6, 2020
Tagged in: Access to Care
COVID-19