This specialty clinic has one or more physician specialists available. TVCC clinicians including physiotherapy (PT), occupational therapy (OT), speech-language pathology (SLP), social work (SW) and registered nurse (RN) clinician are often a part of these Specialty Clinics. The primary contact is Hannah Hojdak – Hanna.Hojdak@tvcc.on.ca
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.
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 18th birthday. Referrals from your primary provider will be needed.
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:
Clinics
London
Thames Valley Children’s Centre Rett Syndrome Clinic – London, Ontario
This specialty clinic has one or more physician specialists available. TVCC clinicians including physiotherapy (PT), occupational therapy (OT), speech-language pathology (SLP), social work (SW) and registered nurse (RN) clinician are often a part of these Specialty Clinics. The primary contact is Hannah Hojdak – Hanna.Hojdak@tvcc.on.ca
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
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 18th birthday. Referrals from your primary provider will be needed.
This includes patients with:
CHEO provides best-practice Rett syndrome expertise regarding:
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.