Watch the March 3 Live-Streamed Meeting

An On-Demand Recording of the NFXF-Led Patient-Focused Drug Development Meeting

NFXF held an externally led patient-focused drug development (PFDD) meeting for Fragile X syndrome on March 3, 2021. A recording of the entire meeting is now available for you. 

Our PFDD meeting served as a platform for self-advocates, siblings, parents/caregivers, and patient advocates to share their wants, needs, and perspectives on drug development in Fragile X syndrome. PFDD provides a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.

NFXF believes all research should be patient-centric. There should be no treatments developed for Fragile X without the community having a say — after all, you are the ones who will be using it! This meeting is about your voice. Each disease can only host one PFDD meeting, so this is our opportunity to bring the patient perspective to the table.

Learn more about the meeting and about Fragile X syndrome.