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Fragile X Syndrome Program

What is Fragile X Syndrome?

Fragile X syndrome (FXS) is a genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics. Though FXS occurs in both genders, males are more frequently affected than females, and generally
with greater severity –
National Fragile X Foundation The Greenwood Genetic Center is part of the National Fragile X Clinical and Research Consortium (FXCRC), which is funded by the National Fragile X Foundation and the US Centers for Disease Control and
Prevention.

Clinical Care

  • The Greenwood Genetic Center’s Fragile X syndrome (FXS) clinics serve both pediatric and adult patients with FXS.
  • FXS clinics involve a clinical geneticist, genetic counselor, and developmental-behavioral pediatrician.
  • GGC’s FXS clinic can also assist with referrals to local medical specialists and behavioral and therapy services. Genetic testing is also available through GGC’s Molecular Diagnostic Laboratory.
  • The Center’s Greenville, SC office is the clinical home for the FXS clinic. Travel reimbursement to Greenville is available through the NFXF and the Fly with Me Fund. Clinic visits and research study enrollment
    in FORWARD can also be performed at other GGC locations and may include telemedicine and telegenetics.

Research

  • FORWARD: GGC is a site of FORWARD (Fragile X Online Registry With Accessible Research Database), a multisite observational
    natural history study affiliated with the FXCRC. FORWARD acts as a research hub to connect patients to current projects.
  • Clinical Trials: 
    • GGC is one of 20 clinical sites
      for CONNECT-FX (Clinical Study of Cannabidiol (CBD) in Children and Adolescents with Fragile X) is a multi-national, randomized, double-blind, placebo-controlled, 14-week trial to assess the efficacy and safety of an investigational CBD gel (ZYN002)
      in children ages three through 17 with full mutation FXS. CONNECT-FX is a clinical study evaluating transdermally delivered ZYN002 as a potential treatment for some common behavioral symptoms associated with FXS.

Contact Us for More Information

fragilex@ggc.org



Meet The Jones Family

The journey to becoming parents did not start as an easy one for my husband and I. We suffered the heartache of miscarriage and the unimaginable pain of burying our first born child. Our son, sweet 1 lb 1.4 ounce, 12 inches long, teeny, tiny little Joseph “Hamilton” Jones was born with spina bifida, hydrocephalus, and a heart defect. It tore our hearts out leaving the hospital without him, knowing our dreams and hope for the future were shattered....

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