RTT — where it's treated in the network
Rett syndrome is a genetic disorder caused by MECP2 mutations that appears almost exclusively in girls after a period of normal development: the child loses learned hand movements and speech, and stereotyped hand movements emerge. In our network clinics a pediatric neurologist-epileptologist, rehab physician, occupational therapist, AAC-experienced speech therapist (picture boards, buttons, eye-gaze) and TCM specialists work together, building the program around the disease stage.
Where it is treated in our network
3 clinics in our network offer different approaches to this diagnosis.
- Shangrao, China
H&B Neurolife — Shangrao
A supportive programme for Rett syndrome: sensory integration and motor sessions to preserve skills, TCM (acupuncture, Tuina) to address sleep and gastrointestinal issues, microbiota regulation where indicated.
Visit clinic site - Yuncheng, China
People's Hospital — Yuncheng
Inpatient unit with 24/7 monitoring for patients with severe drug-resistant epilepsy, pronounced breathing dysrhythmias, or progressive scoliosis requiring surgery. Anticonvulsant titration is possible under long-term video-EEG monitoring, with an intensive care unit available for status epilepticus management.
Visit clinic site - Huizhou, China
Neurolife — Huizhou
Multidisciplinary program for patients with Rett syndrome: PT for mobility preservation and scoliosis prevention through postural exercise and hydrokinesotherapy, OT with hand stereotypy interruption through meaningful activity and adaptive self-care devices, speech therapy with eye-gaze AAC devices. The TCM block complements therapy for autonomic dysrhythmias and sleep disturbances.
Visit clinic site
What is Rett Syndrome?
Rett syndrome is a genetic neurodevelopmental disorder that appears almost exclusively in girls after a period of normal early development. ICD-10 codes it under F84.2; the underlying cause is usually a de novo mutation in the MECP2 gene. Prevalence is about 1 case per 10,000–15,000 live female births.
Families reach the network case manager at different stages: after genetic confirmation of an MECP2 mutation — to start work before strong regression; at the rapid regression stage (1–4 years) — for preserving hand use and communication; to set up AAC eye-gaze; or while discussing trofinetide prescribed by the home neurologist — for the rehabilitation side. Details on causes, symptoms, diagnostics and realistic outlook are in the expandable blocks below.
Frequently asked questions about Rett Syndrome
At what age should rehabilitation start in Rett syndrome?
How do clinics in our network differ in their approach to Rett syndrome?
What is the cost of a Rett syndrome rehabilitation course?
Are trofinetide (Daybue) protocols used in our network clinics?
Talk to a network coordinator
The coordinator reviews your documents and suggests matching clinics. We reply on Telegram and WhatsApp within an hour on workdays.