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 comments in support of FDA Rare Disease Day 2020: Supporting the Future of Rare Disease Product Development
Published: Mar 27, 2020
Tagged in: Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD comments given at the Food and Drug Administration’s (FDA) Rare Disease Day public meeting
Published: Feb 24, 2020
Tagged in: Access to Innovative Medicines and Therapies, Advancing Rare Disease Research and Regulatory Science, Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP), Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP)
NORD sign-on letter from over 40 rare disease patient organizations asking Congress to protect immigrants with rare diseases after having participated in clinical trials
Published: Sep 24, 2019
Tagged in: Immigration, Advancing Rare Disease Research and Regulatory Science
NORD letter urging United States Citizenship and Immigration Services (USCIS) to reverse a recent decision on deferred action that is having a negative impact on immigrants with rare diseases
Published: Sep 17, 2019
Tagged in: Immigration, Advancing Rare Disease Research and Regulatory Science
Coalition statement expressing concern about the Administration’s recent action on medical deferred action
Published: Sep 11, 2019
Tagged in: Immigration, Advancing Rare Disease Research and Regulatory Science
NORD statement to the House Committee on Oversight and Reform regarding the recent United States Citizenship and Immigration Services’ (USCIS) recent actions on deferred action affecting immigrants with rare diseases
Published: Sep 10, 2019
Tagged in: Immigration, Advancing Rare Disease Research and Regulatory Science
