Share Your Voice!
NFXF has secured an externally-led patient-focused drug development (PFDD) meeting for Fragile X syndrome. Your feedback will help inform drug development in FXS.
PFDD is 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! Each disease can only host one PFDD meeting, so this is our opportunity to bring the patient perspective to the table.
Everyone is invited to the meeting, but if you are a parent, caregiver, or self-advocate, this meeting is for you and we would love to have you join. The meeting will be held virtually, but you do need to register ahead of time.