We are working to build a stronger Fragile X community spanning our 100 counties across North Carolina – reaching from the highest mountains to the deep blue sea. We invite you to join us and help us grow! Click here to learn more about this new statewide effort: Fragile X: We’re Everywhere!
Join us Saturday, October 12, 2026 from 11 AM to 4 PM at the Lake Mackintosh Park Club House for a day to reunite and gather with our NC Fragile X community! Tim Field and his team will be back with another fun-filled celebration for all. Rain or Shine! Register Here Today!
If you are new to the Fragile X community, we welcome you! Whether you have Fragile X, love someone impacted by Fragile X, work with someone who has Fragile X, or just want to learn more – our community is here to help!
Find out how you can get involved!
Founded in 1993, as the North Carolina Foundation to Assist Families with Fragile X Syndrome and Related Disorders of Development.
The Foundation worked to connect families to services, to learn more about the Medicaid services available for families, and provide educational workshops.
In 1998, the NC Fragile X Foundation hosted the 6th International Fragile X in Asheville at the Grove Park Inn with over 1,000 people attending from across the world.
In 2019, the Foundation created a succession plan, clarified their mission, and set a course for the future.
- Join Our Fragile X Community, Help Us Grow!
- Striking It Up for Fragile X at 2026 Bowl-a-Thon!
- Celebrating Disability Pride in Durham
- Wrapping Up a Summer of Sip & Chat
- Shining a Light on Fragile X Awareness
- Finding Connection & Community at NFXF
- Back to School: New Beginnings, New Hopes
- Save the Date Oct 17: Family & Friends Picnic
Striking It Up for Fragile X: Annual Fragile X Bowl-A-Thon
Register Now for the 2026 Fragile X Family Picnic on October 17!
The 2026 Fragile X Bowl-a-Thon was a day filled with laughter, friendly competition, fellowship, and plenty of strikes and spares amongst our 94 bowlers! Thanks to everyone who attended.
Read more here.
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Join us for a day to reunite and gather with our NC Fragile X community! Expect laughter, friendly competition, fellowship, and the chance to connect with other families who understand the Fragile X journey. Register here.
About Fragile X
Fragile X Syndrome (FXS)
Fragile X Syndrome (FXS) is a genetic disorder caused by a mutation (a change in the DNA structure) in the X chromosome.