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 policy@rarediseases.org if you have questions or need additional information.
Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community
Published: Jun 30, 2023
Tagged in: Advancing Rare Disease Research and Regulatory Science
Medicare, Medicaid, and Private Health Insurance Coverage
Orphan Drug Act
Research
NORD sends letter with 125 other patient organizations to ask Congressional leadership to reauthorize Title V programs and pass necessary reforms to benefit patients
Published: Nov 14, 2022
Tagged in: Orphan Drug Act
User Fee Act
NORD and 84 organizations urge Senate HELP leadership to incorporate the RARE Act into the FDA Safety and Landmarks Advancement Act
Published: Jun 3, 2022
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Protecting FDA Standards for Safe and Effective Drugs
RARE Act
NORD drafts comments on Senate Health, Education, Labor and Pensions committee’s discussion on FDA Safety and Landmark Advancements Act
Published: May 22, 2022
Tagged in: Access to Innovative Medicines and Therapies
Expanded Access
FDA’s Accelerated Approval Pathway
Orphan Drug Act
NORD and 86 other organizations ask for the removal of provisions related to the Orphan Drug Tax Credit in the House version of the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD and 86 other organizations oppose the Senate including changes to the Orphan Drug Tax Credit in the Build Back Better Act
Published: Sep 21, 2021
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Orphan Drug Act
Orphan Drug Tax Credit
Research
NORD letter to House Ways & Means Committee opposing Section 138141 of the Build Back Better Act
Published: Sep 13, 2021
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Act
Orphan Drug Tax Credit
NORD submits comments on FDA Draft Guidance on Interpreting Sameness for Gene Therapy Products Under the Orphan Drug Regulations
Published: Jul 28, 2020
Tagged in: Access to Innovative Medicines and Therapies
Advancing Rare Disease Research and Regulatory Science
Gene Therapies
Orphan Drug Act
NORD comments to FDA regarding its definition of low-prevalence in a recent draft guidance
Published: Sep 25, 2018
Tagged in: Access to Affordable Medicines
Access to Innovative Medicines and Therapies
Orphan Drug Act
NORD comments to the American Medical Association expressing concerns with their resolution proposing reforms to the ODA
Published: Jun 1, 2018
Tagged in: Access to Innovative Medicines and Therapies
Orphan Drug Act
