Rett Syndrome Expertise, Treatment and Family Support
National Leaders in Rett Syndrome Care
Our clinic is recognized as a Center of Excellence by the International Rett Syndrome Foundation, International Foundation for CDKL5 Research and FOXG1 Research Foundation. We are also recognized as a clinic of distinction by Rett Syndrome Research Trust and the MECP2 Duplication Foundation.
These honors reflect our deep experience caring for children and adults with rare neurodevelopmental disorders.
Our clinic is part of the Neurology program at Cincinnati Children’s, ranked among the nation’s best by U.S. News & World Report.
Coordinated Care Across Specialties
Rett syndrome and related disorders can affect many areas of a child’s health. Our team includes experts in neurology, epilepsy, genetics, developmental and behavioral pediatrics, sleep medicine, nutrition, rehabilitation, speech therapy and occupational therapy.
We also work closely with specialists in gastroenterology, cardiology, pulmonology, orthopaedics and endocrinology when needed.
This team-based approach helps families receive coordinated care with fewer separate appointments and clearer communication between providers.
Personalized Guidance and Second Opinions
Every child experiences Rett syndrome differently. Symptoms, abilities and support needs can change over time.
Our team creates a personalized care plan based on your child’s health, goals and daily needs. Families also come to us for expert second opinions to better understand a diagnosis or explore additional treatment options.
We work closely with local physicians to help children continue receiving care closer to home whenever possible.
Access to Emerging Therapies and Research
Our program participates in clinical trials and natural history studies focused on Rett syndrome, CDKL5 and related disorders.
Families may have access to emerging therapies and research opportunities available through Cincinnati Children’s. Our team continually updates treatment approaches using the latest research and clinical advances.
Genetics experts also help families better understand how specific genetic changes may affect symptoms, treatment decisions and long-term planning.
Lifelong Support for Families
We care for children and adults across every stage of life. Our team understands the medical, developmental and daily support challenges families often manage at home.
Families consistently share positive feedback about the long-term relationships they build with our care team. We are committed to supporting your family with trusted guidance, coordinated care and ongoing partnership over time.
