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
Coalition comments on Health and Human Services (HHS) Notice of Benefit and Payment Parameters for 2019
Published: Nov 27, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition statement in opposition to the House of Representatives’ vote to repeal the Orphan Drug Tax Credit
Published: Nov 20, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
NORD letter to IL Department of Healthcare and Family Services regarding Medicaid DUR for nusinersen and other orphan drugs
Published: Nov 15, 2017
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
Coalition statement urging Congress to not include a repeal of the individual mandate within tax reform
Published: Nov 14, 2017
Coalition statement by 36 patient organizations in opposition to the Senate’s proposed weakening of the Orphan Drug Tax Credit
Published: Nov 14, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
Coalition letter from over 200 patient organizations imploring Congress to maintain the Orphan Drug Tax Credit **Updated letter as of November 10**
Published: Nov 8, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
Coalition letter in support of the proposed substitute for Michigan House Bill No. 4472
Published: Oct 31, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition statement urging Congress to act on the Bipartisan Health Care Stabilization Act of 2017 in light of the Congressional Budget Office (CBO) report
Published: Oct 26, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request
Published: Oct 20, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition statement in support of the HELP bipartisan stabilization deal
Published: Oct 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to the Centers for Medicare & Medicaid Services (CMS) regarding the MassHealth Section 1115 Demonstration Amendment Request
Published: Oct 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Coalition letter to Congress in support of the Ensuring Children’s Access to Specialty Care Act of 2017
Published: Oct 12, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter urging Congress to include support for loan repayment for pediatric subspecialists as part of the effort to reauthorize the Title VII health professions workforce programs
Published: Oct 12, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter urging the House to adopt the Senate Appropriations Committee’s funding levels for outreach and enrollment in marketplace coverage under the Affordable Care Act
Published: Oct 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Appropriations
Coalition statement regarding President Trump’s executive order released today
Published: Oct 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Short-Term, Limited-Duration Health Plans and Association Health Plans
Coalition letter urging Congress to reject any proposal to increase Medicare Part D copayments for beneficiaries receiving the low-income subsidy (LIS)
Published: Sep 29, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to the Institute for Clinical and Economic Review (ICER) on a proposed adaptation to its value framework for the assessment of treatments for ultra-rare conditions
Published: Sep 25, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
Coalition statement regarding the Senate Finance Committee Hearing to Consider the Graham-Cassidy-Heller-Johnson Proposal
Published: Sep 22, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to the House Energy and Commerce Committee in opposition to S.204, the Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017, and H.R. 878, the Right to Try Act of 2017
Published: Sep 19, 2017
Tagged in: Access to Innovative Medicines and Therapies
Right to Try
Coalition statement in opposition of Graham/Cassidy Bill
Published: Sep 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Sign-on letter from 140 patient organizations urging Congress to keep the Orphan Drug Tax Credit in place
Published: Sep 14, 2017
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Tax Credit
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding the “14-Day Rule”
Published: Sep 11, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD comments to the Centers for Medicare & Medicaid Services (CMS) regarding biosimilars
Published: Sep 11, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter urging Secretary Price to retain the six protected classes under Medicare Part D
Published: Sep 8, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD letter voicing concerns over California Assembly Bill 265
Published: Aug 30, 2017
Tagged in: Access to Affordable, Adequate Coverage
Copay Assistance
NORD comments on the Massachusetts Executive Office of Health and Human Services’ (EOHHS) proposed Amendment to the MassHealth Section 1115 Demonstration
Published: Aug 21, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
NORD letter to Congress outlining short-term and long-term stabilization and improvement proposals for the Affordable Care Act (ACA)
Published: Aug 16, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging the House to restore Medicare State Health Insurance Assistance Program (SHIP) funding to FY16 levels
Published: Jul 18, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments in response to Health and Human Services (HHS)’s Request for Information (RFI) on ways to reduce regulatory burdens and improve health care choices to empower patients
Published: Jul 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging Congress to negotiate a bipartisan budget deal that raises the sequestration caps
Published: Jul 11, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
Coalition letter opposing proposed budget cuts to newborn screening programs
Published: Jul 6, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter urging Senate leadership to protect Medicaid
Published: Jun 15, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter urging Congress to reauthorize the Children’s Health Insurance Program (CHIP)
Published: Jun 12, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments to FDA on the creation of an Office of Patient Affairs
Published: Jun 12, 2017
Tagged in: Access to Innovative Medicines and Therapies
Patient Focused Drug Development
NORD letter in support of the Medical Nutrition Equity Act of 2017
Published: Jun 9, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medical Nutrition
Coalition letter in support of New York S.4788/A.7509, acts regarding the substitution of interchangeable biological products
Published: Jun 1, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Zika Coalition letter to the House Committee on Energy and Commerce
Published: May 23, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Oregon coalition letter regarding out-of-pocket costs
Published: May 17, 2017
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter in support of the Enhancing Clinical Trial Design Act
Published: May 9, 2017
Tagged in: Access to Innovative Medicines and Therapies
Rare Disease Clinical Trials
Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
Published: May 8, 2017
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
Coalition principles for access to unapproved therapies
Published: May 2, 2017
Tagged in: Access to Innovative Medicines and Therapies
Expanded Access
NORD comments on FDA Reauthorization Act of 2017 discussion draft
Published: Apr 28, 2017
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD letter in support of the Rare Disease Expert Provision in Iowa House File 653
Published: Apr 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
MAPRx Coalition letter to the Centers for Medicare & Medicaid Services (CMS)
Published: Apr 24, 2017
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
Coalition comments on manufacturer communications regarding unapproved uses of approved or cleared medical products
Published: Apr 19, 2017
Tagged in: Access to Innovative Medicines and Therapies
MODERN Labeling
Coalition letter urging Congress to provide funding for newborn screening in FY 2018 appropriations
Published: Apr 4, 2017
Tagged in: Access to Diagnostics
Appropriations
Newborn Screening
NORD comments on proposed changes to ICER’s value framework
Published: Apr 3, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD comments on ICER’s Patient Participation Guide
Published: Apr 3, 2017
Tagged in: Access to Affordable Medicines
Value-based Pricing Assessments
NORD letter in support of California Senate Bill 643, a bill to add Duchenne muscular dystrophy to the list of medical conditions eligible for the Genetically Handicapped Persons Program
Published: Mar 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
SSI/SSDI
NORD letter in support of Iowa House File 233, an act regarding step therapy protocols
Published: Mar 28, 2017
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management