Rett Syndrome Clinic

Rett Syndrome is a debilitating neurological disorder diagnosed almost exclusively in girls and occurring in one of every 10,000 female births in the United States. It's rare enough that it can be a real challenge to find quality, family-focused health care options in your area. At UCSF Benioff Children's Hospital Oakland, we're proud to house Katie’s Clinic for Rett Syndrome, a specialty clinic that is one of the few places in the United States that specializes in the diagnosis and comprehensive care for girls and young women with Rett Syndrome.

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Why Families Choose Us

Care and Treatment Options You Can Take Home

  • Katie’s Clinic was founded because the medical concerns and development of girls with Rett Syndrome are unique and require specialized care.
  • While there's currently no cure, treatments are available that can improve the quality of life for girls and young women with Rett—as well as that of their families. Our goal is to help the patient, her family, and their care team back home manage health and development issues.

Rett Syndrome Treatment for the Entire Western United States

  • Providing outstanding care for Rett Syndrome in a one-stop shop is rare in the United States. Katie’s Clinic is one of only six clinics in America that provides comprehensive care for Rett Syndrome patients and their parents and serves all the Western states, including Hawaii.
  • We participate in clinical research aimed at learning more about Rett Syndrome management and treatment strategies to continue to provide cutting-edge support and medical care for decades to come.

A Team Approach to Caring for Rett Syndrome

  • Because a variety of issues commonly affect Rett Syndrome patients, including seizures, sleep and breathing disturbances, behavioral concerns, motor disabilities, and communication challenges, we take a team approach to care.
  • Initial evaluation and ongoing coordination of care are led by a developmental-behavioral pediatrician, a pediatric neurologist, and a pediatric nurse practitioner. Other care team members may include physical or occupational therapists, speech therapists who specialize in augmentative communication, and nutritionists.
  • Your child may also be referred to other professionals at Children’s Hospital Oakland. The Rett Clinic has the benefit of being able to draw from several Children’s Hospital Oakland departments. Specialists from Developmental & Behavioral Pediatrics, Neurology, Medical Genetics, Orthopedics, and Gastroenterology may be involved in your child’s care.
  • By taking a multidisciplinary approach right here at our facilities, we're better able to address all your child’s health concerns in one comfortable and family-focused location.