For decades, NORD has pursued federal and state policies that will change the lives of Americans impacted by rare diseases for the better. NORD’s work can be viewed below. This page is updated daily to provide timely information. Please contact us if you have questions or need additional information.
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: Research, Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, Orphan Drug Act, Orphan Drug Tax Credit
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: Research, Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, Orphan Drug Act, Orphan Drug Tax Credit
NORD, MDA, and FARA letter to the Senate Labor, Health and Human Services, Education, and Related Agencies Appropriations Subcommittee on supporting rare disease programs at NCATS in FY22
Published: Sep 15, 2021
Tagged in: Appropriations, Ensuring Adequate Funding for NIH, Advancing Rare Disease Research and Regulatory Science
NORD Submits Comments to Reps. DeGette and Upton on 21st Century Cures 2.0 Discussion Draft
Published: Jul 26, 2021
Tagged in: Access to Affordable, Adequate Coverage, Access to Affordable Medicines, Access to Diagnostics, Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, COVID-19
NORD Submits Comments to the National Center for Advancing Translational Sciences (NCATS) RFI on Facilitating the Early Diagnosis and Equitable Delivery of Gene-Targeted Therapies to Individuals with Rare Diseases
Published: Jun 30, 2021
Tagged in: Gene Therapies, Advancing Rare Disease Research and Regulatory Science
