National Institutes of Health Resources
The National Institutes of Health and National Center for Advancing Translational Sciences offer a wide range of information, resources, and services for patients and families. Many of these are dedicated to engaging the patient community throughout the translational science process:
U.S. Food and Drug Administration Resources
Academic investigators, patient groups, and small or emerging pharmaceutical and biotechnology companies play a critical role in rare disease drug development and are often the sponsors for rare disease drug development, but they may lack regulatory experience. These resources will help bridge the gap between academic investigation and the regulatory aspects of drug development.
Webinar Series: Navigating the World of Rare Disease Clinical Trials from the Patient Perspective
From July 2020 through January 2021, the RDCRN-CPAG will host a five-part, bi-monthly webinar series entitled, “Navigating the World of Rare Disease Clinical Trials from the Patient Perspective.” Please check back periodically for new postings.
Webinar Series: Rare Advocacy Resource Exchange
The RDCRN Coalition of Patient Advocacy Groups is hosting a webinar series entitled, “Rare Advocacy Resource Exchange.” This webinar series spotlights resources available to help patient advocacy groups accomplish their work. Please view the archived recordings below and check back periodically for new postings: