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 submits comments to FDA on Request for Information on Rare Disease Clinical Trial Networks
Published: Jul 31, 2020
Tagged in: Advancing Rare Disease Research and Regulatory Science, Rare Disease Clinical Trials, Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD submits comments on FDA Draft Guidance on Interpreting Sameness for Gene Therapy Products Under the Orphan Drug Regulations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: Gene Therapies, Advancing Rare Disease Research and Regulatory Science, Orphan Drug Act
Coalition comments to the President and Congress outlining the detrimental impact of the shutdown on FDA and asking for it to be brought back to its full capacity
Published: Jan 23, 2019
Tagged in: Access to Innovative Medicines and Therapies, Protecting FDA Standards for Safe and Effective Drugs
Updated sign-on letter from over 100 patient and provider organizations in opposition to the Right to Try Act
Published: Mar 19, 2018
Tagged in: Access to Innovative Medicines and Therapies, Right to Try
Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements
Published: May 8, 2017
Tagged in: Access to Innovative Medicines and Therapies, Protecting FDA Standards for Safe and Effective Drugs
