NFXF Blog

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

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

The National Fragile X Foundation has been awarded a $1 million CDC grant to expand healthcare resources, provider education, and support for the Fragile X community.

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

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.

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.

Watch the 2026 Summer Scholars research project presentations by Erin Burnett, Iris Chen, Nura Salem, and Tim Smith.

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.

Tetsuya Asano, a 2026 Jr. Investigators Awardee, summarizes an important talk by Jessica Klusek during the 20th International Fragile X Conference.