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
American Plasma Users Coalition (APLUS) letter to Congress regarding patient protections
Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition for Accessible Treatments (CAT) letter to Congress regarding ACA Cost Sharing
Published: Mar 7, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition healthcare reform principles
Published: Mar 6, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter in support of CT HB 7118, an act calling for prescriber communication with regard to biosimilars
Published: Mar 1, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter to President Trump regarding rare diseases and the hiring freeze
Published: Feb 27, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
NORD Principles for Health Coverage Reform
Published: Feb 23, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
NORD State Ambassador testimony before the Connecticut General Assembly’s Public Health Committee supporting HB 6009, an act to establish a Rare Disease Advisory Council
Published: Feb 22, 2017
Tagged in: Rare Disease Advisory Councils (RDACs)
NORD letter in support of New Mexico Senate Bill 180 and House Bill 260, acts calling for prescriber communication with regard to biosimilars
Published: Feb 17, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Alabama House Bill 82, an act calling for prescriber communication with regard to biosimilars
Published: Feb 15, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
Coalition letter urging Congress to preserve funding for programs that provide critical support to state newborn screening programs
Published: Feb 10, 2017
Tagged in: Access to Diagnostics
Newborn Screening
Coalition letter urging Congress to provide ample funding to combat the Zika virus
Published: Feb 10, 2017
Tagged in: Advancing Rare Disease Research and Regulatory Science
Coalition letter to New Jersey Legislature regarding patient out-of-pocket costs for prescription medications
Published: Feb 10, 2017
Tagged in: Access to Affordable, Adequate Coverage
Out of Pocket Prescription Drug Costs
NORD letter on preexisting conditions insurance protections
Published: Feb 9, 2017
Tagged in: Access to Affordable, Adequate Coverage
Affordable Care Act
Coalition letter to President Trump regarding vaccine safety
Published: Feb 7, 2017
Tagged in: Access to Innovative Medicines and Therapies
NORD letter in support of South Carolina Senate Bill 299 and South Carolina House Bill 3438
Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Nebraska Legislative Bill 481
Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Alaska Senate Bill 32
Published: Feb 3, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Kansas House Bill 2107
Published: Jan 24, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD letter in support of Montana House Bill 233
Published: Jan 18, 2017
Tagged in: Access to Affordable Medicines
Biosimilars
NORD comments to FDA on the Center for Devices and Radiological Health’s (CDRH) establishment of the Patient and Care-Partner Connection (P&CC)
Published: Jan 6, 2017
Tagged in: Access to Innovative Medicines and Therapies
Devices for Small Populations
NORD and EveryLife Foundation Outline 2 Technical Corrections to the IRA’s Orphan Drug Exclusion to Improve the Lives of Those Living with Rare Diseases
Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD Submits Comments on Docket No. NOT-AR-22-023; Request for Information on Themes for the NIAMS Strategic Plan for Fiscal Years 2025-2029
Published: Jan 1, 1970
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
Public Health
Research
NORD Submits Letter of Support on A1825 (Conaway) An Act Establishing Certain Guidelines Concerning Step Therapy Protocols
Published: Jan 1, 1970
Tagged in: Access to Affordable Medicines
Access to Affordable, Adequate Coverage
NORD letter of thanks to Rep. Rob Nosse, sponsor of Oregon House Bill 2047, a bill to create a Rare Disease Advisory Council
Published: Jan 1, 1970
Tagged in: Rare Disease Advisory Councils (RDACs)
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.
