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 Submits Letter in Support of Washington SB5064 to Create a Rare Disease Advisory Council
Published: Jan 17, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Letter in Support of Washington HB1238 to Create a Rare Disease Advisory Council
Published: Jan 17, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Urges Nevada Lawmakers to Protect the Rare Disease Advisory Council
Published: Jan 16, 2025
Tagged in: Rare Disease Advisory Councils (RDACs)
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, as a member of the NCATS Alliance, sends letter requesting NCATS be elevated to an Institution at NIH
Published: Dec 20, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Ensuring Adequate Funding for NIH
NORD submits comments to FDA on Integrating Randomized Controlled Trials for Drug and Biological Products Into Routine Clinical Practice
Published: Dec 17, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Clinical Trials
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
NORD Joins Patient Organizations in Support of Ohio HB24 to Provide Biomarker Testing Coverage
Published: Dec 17, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Joins 54 Patient Organizations in Urging Arizona to Protect Biomarker Testing Access
Published: Dec 13, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Supports New Jersey Senate Bill 3098 Establishing Coverage for Biomarker Testing
Published: Dec 12, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Genetic Testing
Utilization Management
NORD joins letter urging CMS to implement appropriate guardrails on utilization management in Part D
Published: Dec 12, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD joins leading patient groups in letter to Congress urging protection for Medicaid during budget reconciliation process
Published: Dec 10, 2024
Tagged in: Medicare, Medicaid, and Private Health Insurance Coverage
NORD joins letter to Congressional leadership outlining coverage priorities
Published: Dec 10, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD, along with the Everylife Foundation for Rare Diseases, sends letter with 213 patient organizations urging Congressional leadership to include PRV legislation in an end-of-year package
Published: Dec 4, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Leads 230 Patient Organizations and Children’s Hospitals in Sign On Letter in Support of the Accelerating Kids’ Access to Care Act
Published: Dec 3, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Joins Over 100 Patient Organizations in Letter Urging Congress to Fully Fund Congressionally Directed Medical Research Programs
Published: Dec 2, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
25 Groups Representing Patients and Health Care Professionals Urge U.S. Court of Appeals to Preserve Nondiscrimination Protections for LGBTQ+ Patients
Published: Nov 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
25 Groups Representing Patients and Health Care Professionals Urge U.S. Court of Appeals to Preserve Nondiscrimination Protections for LGBTQ+ Patients
Published: Nov 26, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD signs-on to letter supporting the Clinical Trial Modernization Act (H.R. 8412)
Published: Nov 18, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Clinical Trials
NORD Urges Governor Walz to Approve the Minnesota RDAC FY25 Funding Request
Published: Nov 15, 2024
NORD Signs on to Letter Supporting End of Year Package to Support Rare Diseases
Published: Nov 14, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
NORD Joins Leading Patient Organizations in Letter to HHS on 2026 NBPP
Published: Nov 12, 2024
Tagged in: Access to Affordable, Adequate Coverage
National Organization for Rare Disorders CEO Pamela Gavin’s Statement on 2024 Election
Published: Nov 6, 2024
NORD Submits Comments on its Priorities for the FDA Rare Disease Innovation Hub
Published: Oct 31, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
Protecting FDA Standards for Safe and Effective Drugs
NORD Joins Over 200 Patient and Provider Organizations in a Letter of Support to Congressional Leadership for the Safe Step Act
Published: Oct 15, 2024
Tagged in: Access to Affordable, Adequate Coverage
Utilization Management
NORD joins statement supporting permanent extension of ACA’s eAPTCs
Published: Oct 15, 2024
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Issues Letter of Support for New Jersey S3533 Regarding Step Therapy Protocols
Published: Oct 9, 2024
Tagged in: Access to Innovative Medicines and Therapies
Utilization Management
NORD Sends Letter to New York State Department of Health Commissioner Asking for a Permanent NY RDAC in FY26
Published: Oct 2, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Joins 35 Patient Organizations in Colorado to Request Support for Biomarker Legislation
Published: Sep 30, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD joins statement on Nevada’s Section 1332 waiver request
Published: Sep 25, 2024
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
Statement from Pam Gavin, CEO of the National Organization for Rare Disorders (NORD), on Unanimous House Passage of the Give Kids a Chance Act
Published: Sep 24, 2024
NORD joins letter to Congress urging meaningful PBM reform
Published: Sep 18, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Issues Letter of Support for Give Kids A Chance Act and Telehealth Modernization Act
Published: Sep 17, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
Telehealth
NORD Leads Nearly 200 Patient Organizations in a Letter of Support to Senate Leadership for Rare Pediatric PRV Reauthorization
Published: Sep 16, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Leads Nearly 200 Patient Organizations in a Letter of Support to House Leadership for Rare Pediatric PRV Reauthorization
Published: Sep 16, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD signs on letter supporting the passage of the PASTEUR Act
Published: Sep 12, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Signs on to Letter Addressing Patient Community Concerns Regarding H.J. Res. 181, Congressional Review Act resolution to stop the Biden-Harris rule limiting access to Association Health Plans (AHPs)
Published: Sep 11, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD Joins Patient Organizations in Support of New Jersey A4163 Regarding Insurance Coverage of Biomarker Testing
Published: Sep 10, 2024
Tagged in: Access to Affordable, Adequate Coverage
Access to Diagnostics
Genetic Testing
NORD Joins Comments to CMS on OPPS Rule
Published: Sep 9, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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 and 35 Patient Organizations Ask Governor Newsom to Sign AB2613 to Create a Rare Disease Advisory Council in California
Published: Aug 30, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Submits Comments to CMS in Response to Negotiation Data Elements ICR
Published: Aug 29, 2024
Tagged in: Access to Affordable Medicines
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Asks California Governor Gavin Newsom to Sign AB2613 to Establish a Rare Disease Advisory Council
Published: Aug 29, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins letter in support of New York’s 1332 waiver
Published: Aug 23, 2024
Tagged in: Access to Affordable, Adequate Coverage
Section 1332 Waivers
NORD Urges the California Senate to Support AB2613 (Zbur) to Create an RDAC
Published: Aug 19, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD submits comments on “Platform Technology Designation Program for Drug Development; Guidance for Industry”
Published: Aug 15, 2024
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Protecting FDA Standards for Safe and Effective Drugs
NORD joins statement urging CFPB to protect consumers’ medical information
Published: Aug 12, 2024
NORD joins statement urging CMS to reduce barriers to access in Iowa’s Medicaid program
Published: Aug 11, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Section 1115 Waivers
Medicare, Medicaid, and Private Health Insurance Coverage
NORD submits comments in response to RFI on Cures 2.0
Published: Aug 2, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Diagnostics
Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
FDA’s Accelerated Approval Pathway
Telehealth
NORD Signs on to Letter of Support for the Innovation in Pediatric Drugs Act of 2024 (S. 4905)
Published: Aug 2, 2024
Tagged in: Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
NORD joins leading patient groups in supporting New York’s Medicaid Redesign Team Waiver
Published: Jul 24, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.
