In their article, “Public Health Research on Fragile X Syndrome”, the CDC explains their Fragile X syndrome (FXS) data collection progress, and results from a recent stakeholder meeting where they identified public health gaps.

The NFXF is proud to play a major role in the data collection process as a manager of the Fragile X Clinical & Research Consortium, which collects FXS data in the CDC-funded FORWARD Registry and Database. We also co-sponsored the aforementioned stakeholder meeting in May, which former NFXF Interim Executive Director Jeffrey Cohen attended.

We encourage you to read the CDC’s article to learn more about their FXS public health efforts, and their steps going forward.