NFXF Blog

How do researchers know whether a new treatment meaningfully improves life for people living with FXS? A recent study found that a commonly used behavioral measure in FXS clinical trials captures many of the challenges caregivers say matter most, including behaviors like social avoidance, irritability, and hyperactivity. These findings can help researchers choose meaningful ways to measure whether treatments are making a difference in everyday life.

We know many individuals living with Fragile X want to work, and though some do, not everyone who wants a job has found one that best fits their strengths and skill sets. We’re determined to help you educate yourself on the existing supports and how to best advocate in the workplace.

Shionogi provides updates on the EXPERIENCE adult and adolescent studies in Fragile X syndrome.

The initiative will build on our 40 years of work, promoting broader use of evidence-based information among individuals with FXS, caregivers, family members, community partners, and healthcare providers nationwide.

Advocacy for the NFXF means listening, learning, asking questions, and making sure the voice of the Fragile X community is part of the conversation.

Our latest advocacy update breaks down what has changed, what hasn’t, and why both federal and state advocacy matter.

We explain where the challenges come from, what makes FXS treatment different from other conditions, and how to start building a clearer picture of your options.

We ask the Fragile X community to share any specialists who have helped them with FXPOI and who might be interested in learning more about the consortium.

Carme Torrents, MD, a 2026 Jr. Investigators Awardee, summarizes an important symposium by Drs. Elizabeth Smith, Tatyana Adayev, and Anne Wheeler, during the 20th International Fragile X Conference.