Toronto

Complex Care RS Pathway Clinic – Holland Bloorview

This clinic provides comprehensive medical care and care coordination for individuals with Rett syndrome less than 18 years of age. The diagnosis must be made by a qualified physician based on accepted diagnostic criteria OR genetic testing confirming a mutation in the MeCP2 gene. A physician referral is required.

Toronto Western Hospital Provides Support  – Toronto, Ontario

Ottawa

Children’s Hospital of Eastern Ontario (CHEO) Rett Syndrome Clinic – Ottawa, Ontario

Updated as of March 1, 2023

Rett syndrome care at CHEO [Read More]

CHEO provides consultative genetics care to children and adults in its region who have Rett syndrome and related disorders. Their pediatric neurologists see patients up to their 18^th birthday.

This includes patients with:

• Classical or atypical Rett syndrome, with or without a MECP2 mutation
• CDKL5 deficiency disordera
• FOXG1 deficiency disorder

CHEO provides best-practice Rett syndrome expertise regarding:

• Neurological problems (seizures, dystonia, spasticity, apraxia, contractures)
• Autonomic dysfunction (breathing and cardiac dysrhythmia, constipation, vasomotor symptoms)
• Sleep and behavior issues
• Bone health and scoliosis
• Genetics and family planning

A CHEO neurology nurse coordinates care related to Rett syndrome and can be reached at 613-737-7600, ext. 2159, Monday to Friday from 7 a.m. to 3 p.m.