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Next Sip & Chat Zoom Call Nov 20!

Join our monthly Zoom calls and connect with other Fragile X families to discuss topics of interest. Calls will now be held at 7-8 PM on the 3rd Wednesday of every month. After registering, you will receive a confirmation email about joining the meeting. Click here to register with the new link.

Welcome to the NC Fragile X Foundation.

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—we are here to help! Learn how you can be involved!

We are a group of committed volunteers and family members supporting individuals impacted by Fragile X syndrome. 

People sitting on floor in a circle stretching out resistance bands over their heads.

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.

  • Direct Support Professional Recognition Week September 8 – 14, 2024
  • New Workforce Plan to Address DSP Shortage
  • Registration Now Open! Annual Family & Friends Fragile X Picnic Set for Saturday, October 19
  • Sip & Chat Zoom Calls Are Back!
  • Xtraordinary Bowl-a-Thon: A Striking Success for the North Carolina Fragile X Community
  • Dr. Lachiewicz Earns Lifetime Achievement Award
  • Available Now! Vital Services for People with I/DD
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Xtraordinary Fragile X 2024 Bowl-a-Thon

Thanks to everyone who joined us at our yearly fundraiser. We had great participation, friendly competition and family fun. Read all about it here.

Event Alert! Fragile X Picnic CANCELLED

We are sorry to announce that because of a lack of registrations in part due to the devastating effect of Hurricane Helene on Western Carolina, we have decided to cancel our annual picnic that was to be held this coming Saturday, October 19.

About Fragile X

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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.

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Your generosity will help us achieve our mission of improving the lives of those impacted by Fragile X Syndrome.