Video
NFXF-Led Patient Focused Drug Development Meeting with the FDA
March 4, 2021
04 h 03 m
Patient-focused drug development meetings allow the FDA to hear directly from patients, their families, caregivers, and patient advocates. The NFXF PFDD meeting was held on March 3, 2021.
About the Video
With Randi Hagerman, Bernie Fisher (FDA), Elizabeth Berry-Kravis, David Hessl, Linda Sorensen, Jayne Dixon Weber, and Fragile X Community Members
Learn more about the presenters
The NFXF applied to host an externally led patient-focused drug development (EL-PFDD) meeting for Fragile X syndrome because we felt there was a need for patient input in developing treatments for FXS.
This community has experienced several failed trials, and the opportunity to share your experience to guide future drug development is powerful. The purpose of PFDD meetings is to hear directly from patients, their families, caregivers, and patient advocates. Learn more.
- Voice of the Patient Final Report
- View the agenda (PDF)
- Watch The PFDD Meeting Community Forum: Hilary Rosselot hosted a community forum to share more about what to expect during and after the PFDD meeting, including details on how to participate and prepare, and what outcomes we might expect from the meeting.


