Voice of the Patient Report

A Patient-Focused Drug Development Meeting for Fragile X Syndrome

The NFXF applied to host an FDA externally led patient-focused drug development (EL-PFDD) meeting for Fragile X syndrome to receive input directly from patients, their families, caregivers, and patient advocates.

The purpose of PFDD meetings is to hear directly from the community about developing treatments for FXS. This is the final report from that meeting held March 3, 2021.

Learn more about the The NFXF-Led Patient-Focused Drug Development Meeting for Fragile X Syndrome.

As with all of our digital resources, this is provided free of charge. The ability to pay shouldn’t stand in the way of giving help and hope to those living with Fragile X.

Aaron and Jessica Maderia

What makes Aaron and Jessica Xtraordinary to you?

Aaron and Jessica are patient, caring parents to their three kids. Their twin boys bring joy, and their daughter lights up every moment. They’re extraordinary advocates and humans!

The Voice of the Patient Report on a table next to a smartphone and a cup of coffee.