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 comments given at the Food and Drug Administration’s (FDA) Rare Disease Day public meeting
Published: Feb 24, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD joins a coalition one-pager in Oklahoma to support House Bill 3737, regarding copay accumulator adjustment programs
Published: Feb 24, 2020
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD testimony to the Michigan House Health Policy Committee regarding House Bill 5465, legislation to form a Rare Disease Review Committee
Published: Feb 20, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter to Georgia in support of a Rare Disease Advisory Council
Published: Feb 19, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins a coalition letter to Indiana in opposition to SB 184, legislation that would allow for the sale of non-ACA compliant health plans through the Indiana Farm Bureau
Published: Feb 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition statement regarding the House Committee on Ways and Means’ markup of surprise medical billing legislation
Published: Feb 12, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD testimony to South Dakota in support of SB 155, legislation to reform step therapy practices
Published: Feb 11, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement regarding the House Committee on Education and Labor’s markup of surprise medical billing legislation
Published: Feb 11, 2020
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition comments to CMS regarding Georgia’s Section 1115 waiver
Published: Feb 7, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD submits testimony to Arizona in support of HB 2420, legislation to reform step therapy practices
Published: Feb 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement for the record regarding proposed changes to the poverty line calculation
Published: Feb 5, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD submits testimony to Oregon in support of HB 4102, to reform utilization management protocols
Published: Feb 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD comments on the Conditional Approval Act
Published: Feb 3, 2020
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition comments to CMS expressing concerns about the Medicaid fiscal accountability proposal and its potential to lead to significant cuts
Published: Jan 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to the Social Security Administration (SSA) regarding continuing disability reviews (CDRs)
Published: Jan 31, 2020
Tagged in: Access to Affordable, Adequate Coverage
SSI/SSDI
Coalition statement in opposition to CMS’ new proposal to allow for block grant funding of Medicaid
Published: Jan 30, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition one-pager to California in support of AB 2144, to reform utilization management protocols
Published: Jan 27, 2020
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD submits testimony to the Ohio House Health Committee in support of HB 412, an act to create a Rare Disease Advisory Council
Published: Jan 21, 2020
Tagged in: Rare Disease Advisory Councils (RDACs)
Coalition statement expressing disappointment that the Supreme Court will not be reviewing the Texas v. US ruling in an expedited manner
Published: Jan 21, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to CMS requesting a meeting to discuss several concerns about recent policies
Published: Jan 17, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition letter to the Centers for Medicare and Medicaid Services (CMS) regarding Nebraska’s Section 1115 waiver
Published: Jan 17, 2020
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
MAPRx coalition letter in support of S.2911, legislation that would create a mechanism to spread out Medicare Part D out-of-pocket costs over the course of a year
Published: Jan 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
MAPRx coalition letter urging Congress to take action to reverse an unintended dramatic increase in Medicare Part D out-of-pocket costs that is set to occur in 2020
Published: Jan 13, 2020
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
Coalition letter in support of the Ensuring Lasting Smiles Act (H.R.1379)
Published: Jan 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Ensuring Lasting Smiles
Coalition statement in support of a petition urging the Supreme Court to expedite review of the Texas v. US ruling
Published: Jan 3, 2020
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to FDA regarding patient-focused drug development and determining what is important to patients
Published: Dec 30, 2019
NORD comments to CMS regarding drugs that ought to eligible for the recently enacted home infusion benefit
Published: Dec 29, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicare Home Infusion
Coalition letter urging Secretary Azar to ensure that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) can continue its work
Published: Dec 19, 2019
Tagged in: Access to Diagnostics
Newborn Screening
Coalition statement regarding the Texas v US Appellate Ruling
Published: Dec 19, 2019
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition comments in strong opposition to Tennessee’s Section 1115 waiver
Published: Dec 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Pennsylvania regarding its Section 1332 waiver
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Coalition letter to the White House urging action on surprise medical billing
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition letter to Congress urging action on surprise medical billing
Published: Dec 13, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition statement voicing strong opposition to CMS’ decision to allow a state that has not expanded Medicaid, South Carolina, to implement a work requirement
Published: Dec 12, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of moving forward with a bipartisan, bicameral deal on surprise medical billing
Published: Dec 11, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
NORD letter to Congress in support of an expedient solution to surprise medical billing
Published: Dec 10, 2019
Tagged in: Access to Affordable, Adequate Coverage
Surprise Medical Billing
Coalition comments to CMS in opposition to Utah’s Section 1115 waiver
Published: Dec 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Indiana regarding its Section 1115 waiver
Published: Dec 6, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Georgia regarding its Section 1332 wavier to create a reinsurance program
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Georgia regarding its Section 1332 wavier
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Georgia regarding its Section 1115 waiver
Published: Dec 3, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD sign-on letter from over 30 rare disease organizations in support of Dr. Stephen Hahn, the nominee for FDA Commissioner
Published: Dec 2, 2019
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD comments to Nebraska regarding its Section 1115 waiver
Published: Nov 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD statement at FDA Pediatric Stakeholder Meeting
Published: Nov 21, 2019
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Coalition comments to CMS in opposition to Idaho’s Section 1115 waiver
Published: Nov 1, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of S.J.Res.52, a resolution to reverse the recent harmful 1332 guidance
Published: Oct 30, 2019
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD comments to Utah regarding its Section 1115 waiver
Published: Oct 25, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD comments to Tennessee regarding its Section 1115 waiver
Published: Oct 18, 2019
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Federal
Published: Oct 18, 2019
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD letter to Massachusetts in support of H.1853/S.1235, legislation to reform step therapy practices
Published: Oct 8, 2019
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management