Rett Syndrome Program

What is Rett Syndrome?

Through clinical care, research, and advocacy, the Rett Syndrome and Related Disorders Program of GGC's Center for Translational Research is dedicated to the benefit of all individuals and families impacted by these conditions.

GGC is a proud recipient of the Rettsyndrome.org designation as a Clinical Research Center of Excellence!

Clinical Care

  • Rett Syndrome Pediatric Multidisciplinary Clinic - held in conjunction with the Greenville Health System and Shriners Hospital for Children in Greenville, SC. Includes genetics, neurology, developmental pediatrics, physical therapy, and occupational therapy.
    Contact: Kimberly Ivery, LPN at (864) 240-3146 or kivery@shrinet.org

  • Rett Syndrome Adult Clinic - Appointments available at the Greenwood and Greenville offices.

  • Diagnostic Testing - GGC was one of the first labs to offer testing for MECP2, the gene associated with Rett syndrome. The laboratory also offers testing for other genes for related conditions including FOXG1, CDKL5, as well as a Rett/Angelman NGS panel.

Research

Advocacy

  • Development of research agendas, white papers and health economics documents

  • Leadership on numerous key panels and committees (pdf)

Download our Rett program brochure (pdf)

One Mother's Story

One Mother's Story

After a long three-year struggle trying to have children, our son, Charlie, was born on April 18, 2009. He was our miracle...perfect in every way! When Charlie was five days old, our pediatrician called to notify us that one of the numbers from the heel prick test was a bit high. We headed to the hospital that afternoon for more tests. I will never forget the following day. It was cool and crisp - not a cloud in the sky....

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