Rett Spectrum Clinic to open on Medical Campus


The Rett Spectrum Clinic, a specialty clinic designed to care for and support children with Rett syndrome and related disorders such as CDKL5, will open Jan. 30 on the Medical Campus.

The clinic, in Suite 2600 at 4444 Forest Park Avenue, is a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital. Patients and their families will meet with multiple caregivers through the clinic, including specialists in neurology, therapy and nutrition.

Rett syndrome — originally termed cerebroatrophic hyperammonemia — is a rare, severely disabling developmental disability that almost exclusively affects females. Children with the disorder often have small hands and feet, experience developmental regression and deceleration in the rate of head growth, and are prone to gastrointestinal disorders, long QT syndrome and seizures. CDKL5 is a similar, rare genetic disorder located on the X chromosome. The disorders sometimes are misdiagnosed as Angelman syndrome, cerebral palsy or autism.


Patients eligible for the clinic include those diagnosed with or to be evaluated for Rett syndrome or atypical Rett syndrome and those with a confirmed abnormality in any of these genes: MECP2, CDKL5 or FOXG1.

The clinic’s director is Robin Ryther, MD, PhD, assistant professor of neurology. Its co-director is Judy Weisenberg, MD, assistant professor of neurology.

For more information or to make an appointment, clinic coordinator Amy Limpert can be reached at 314-454-6120.