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: User Fee Act, Orphan Drug Act
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 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: User Fee Act, Orphan Drug Act
NORD sends comments to FDA on clinical outcome assessments
Published: Sep 27, 2022
Tagged in: Advancing Rare Disease Research and Regulatory Science, Patient Focused Drug Development
NORD and 40 other organizations sign-on to reform step therapy in Massachusetts
Published: Jul 7, 2022
Tagged in: Access to Innovative Medicines and Therapies, Right to Try
NORD and 27 organizations endorse model legislation on biomarker access to the National Council of Insurance Legislators
Published: Jun 7, 2022
Tagged in: Genetic Testing, Access to Diagnostics, Access to Innovative Medicines and Therapies
NORD and 21 organizations send letter to House Energy and Commerce Committee leadership to support the NIH Clinical Trial Diversity Act
Published: Jun 9, 2022
Tagged in: Clinical Trials, Rare Disease Clinical Trials