NORD Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
NORD on the Issues
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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 Comments on CMS IFR on Community Engagement (Work) Requirements
Published: Jul 29, 2026
NORD Issues Position Statement: State Implementation of Medicaid Community Engagement Requirements (H.R.1)
Published: May 18, 2026
Tagged in: Access to Affordable, Adequate Coverage
Medicaid Engagement Requirements
Medicare, Medicaid, and Private Health Insurance Coverage
NORD Comments on FDA’s Proposed Plausible Mechanism Framework Guidance
Published: Apr 27, 2026
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Access to Pediatric Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Genetic Testing
Protecting FDA Standards for Safe and Effective Drugs
Rare Disease Clinical Trials
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 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
34 Patient Organizations Join NORD in Urging California Senate Appropriations to Support an RDAC in CA
Published: Jul 19, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Urges the California State Senate to Support AB2613 (Zbur) to Create a Rare Disease Advisory Council
Published: Jul 19, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins statement supporting Maryland’s 1332 waiver request
Published: Jul 9, 2024
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Section 1332 Waivers
NORD Submits Comments to CMS on Medicare Drug Price Negotiation Draft Guidance
Published: Jul 2, 2024
Tagged in: Access to Affordable, Adequate Coverage
Federal Drug Pricing Legislation in the 116th Congress
Medicare, Medicaid, and Private Health Insurance Coverage
Out of Pocket Prescription Drug Costs
NORD Sends a Letter of Support to Members the House Energy and Commerce Committee to Vote Yes to Advance Amendment in the Nature of a Substitute to H.R. 3433, Give Kids a Chance Act, which includes key provisions of H.R.7384, Creating Hope Reauthorization Act, H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act, and H.R. 6664, Innovation for Pediatric Drugs Act
Published: Jun 26, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Access to Innovative Medicines and Therapies
NORD Leads Nearly 200 Patient Advocacy Organizations In a Letter of Support to Reauthorize Rare Disease Pediatric Review Voucher (PRV) Program
Published: Jun 24, 2024
Tagged in: Access to Innovative Medicines and Therapies
NORD Responds to Letter of False Accusations Sent to Our Patient Advocacy Members
Published: Jun 20, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Submits Comments on Docket No. FDA-2023-D-5470 for “Real-World Evidence: Considerations Regarding Non- Interventional Studies for Drug and Biological Products”
Published: Jun 17, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Supports NCATS Alliance in Recommendation that Congress Allocate $51.303B for the NIH and $1.194B for the NCATS for Fiscal Year 2025 Appropriations
Published: Jun 13, 2024
NORD Joins 24 Patient and Provider Groups in a Statement Regarding the Supreme Court’s Decision in Alliance for Hippocratic Medicine v. FDA
Published: Jun 13, 2024
Tagged in: Access to Innovative Medicines and Therapies
Protecting FDA Standards for Safe and Effective Drugs
NORD Signs on to Letter Offering Recommendations for Patient Priorities for the 2026 Notice of Benefit and Payment Parameters
Published: Jun 7, 2024
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
Affordable Care Act
NORD & 16 Patient Organizations Ask Speaker Carl Heastie and Leader Andrea Stewart-Cousins for a Permanent NY RDAC (A10292-A/S9724)
Published: May 31, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD joins 122 other organizations in advocating for increased funding for Congressionally Directed Medical Research Programs (CDMRP)
Published: May 30, 2024
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Supports Pennsylvania House Bill 1754 Providing Coverage for Biomarker Testing
Published: May 29, 2024
Tagged in: Access to Diagnostics
Access to Innovative Medicines and Therapies
Gene Therapies
Genetic Testing
NORD joins leading patient groups in urging Congress to require CMS to provide annual updates on the Medicare Prescription Payment Plan (MP3)
Published: May 24, 2024
Tagged in: Access to Affordable, Adequate Coverage
NORD Issues Letter of Support for A10292 (Paulin) – Creating a Permanent RDAC in New York State
Published: May 17, 2024
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD Issues Letter of Support for North Carolina Bill HB681 Joining the Interstate Medical Licensure Compact (IMLC)
Published: May 14, 2024
Tagged in: Telehealth
NORD joins leading patient groups in urging CMS to approve Colorado’s Demonstration Amendment extending continuous eligibility to children on Medicaid
Published: May 13, 2024
Tagged in: Access to Affordable, Adequate Coverage
Medicare, Medicaid, and Private Health Insurance Coverage
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