About the National Fragile X Foundation

The National Fragile X Foundation serves all those living with Fragile X with a focus on community, awareness, and research in the pursuit of treatments and a cure. Fragile X syndrome is the most common inherited intellectual and developmental disability. An estimated 1.5 million Americans have the gene premutation, and an estimated 100,000 Americans have Fragile X syndrome.

2 smiling boys

Mission & Vision

Advocacy, Education, Research, Treatment

Our mission is to serve the entire Fragile X community to live their best lives by providing the knowledge, resources, and tools until, and even after, more effective treatments and a cure are achieved.

Linda Sorensen

Our Team

Meet the People That Make NFXF Possible

Here you can meet our staff, regional leaders, board of directors, and the NFXF Scientific and Clinical Advisory Committee.

Two women in front of the U.S. capital building

Our Programs

Advocacy, Education, Research, Treatment

A list of programs to meet our mission and vision for the community.

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Financials & Impact Report

Audited Financial Statements

The National Fragile X Foundation was founded in 1984 as a public, non-profit 501(c)(3) charitable organization. To give our donors confidence that their donations are being used wisely to support Fragile X families, we provide audited financial statements, government certifications, independent certifications, and an annual impact report based on our audited financial statements. We are funded through individual contributions.