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

Permanently Closed as of January 1, 2023

A message from CHEO:

The Dr. Peter Humphreys Rett Syndrome Clinic at CHEO ran from 2006 until the end of 2022. 

CHEO is extremely grateful for the funding support from ORSA which made the clinic possible. The clinic was headed by Dr. Humphreys from 2006 until his retirement in 2017. Drs. Melissa Carter (geneticist) and Erick Sell (neurologist) ran the clinic from 2017-2022. Renee Brannan was the Nurse Coordinator since the clinic’s inception until it closed. The clinic followed over 75 individuals with Rett syndrome, CDKL5 deficiency disorder, and FOXG1 syndrome during its 13 years of service. 

While the clinic itself is no longer in operation, consultations may be requested with Dr. Carter or Dr. Sell, for patients within the province of Ontario and eastern Quebec. Virtual appointments are possible.

For Rett-related issues requiring a neurologist’s input (eg seizure management), referrals can be made by a physician or nurse practitioner to Dr. Erick Sell in the Neurology clinic at CHEO. This is a pediatric clinic, so patients must be under 18 years of age. See this website for information on how to refer.

For Rett-related diagnostic questions, or for those newly diagnosed, referrals can be made by a physician or nurse practitioner to Dr. Melissa Carter in the Genetics clinic at CHEO. This clinic accepts patients of all ages. See this website for information on how to refer.