Holland Bloorview Kids Rehabilitation Hospital (HBKRH) in Toronto now has a complex care clinic dedicated to children and adolescents with Rett syndrome. Our first official day of clinic was May 13, 2013. Clinics are scheduled six times per year on the second Monday of alternating months.

Nancy Campbell is a registered practical nurse at Holland Bloorview Kids Rehabilitation Hospital. She is the clinic’s nurse coordinator. ncampbell@hollandbloorview.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. Outpatient referral forms can be found online at http://hollandbloorview.ca/programsandservices/Referrals

What to expect at your first visit

You and your child will meet with the team for approximately one hour. We will occasionally have medical or nursing students, resident physicians and other learners with us as well. We will try to answer your questions or put you in touch with other clinicians who can. We have a team of physicians and therapists we consult with regularly, including specialists in neurology, psychopharmacology, orthopedics, sleep medicine, cardiology, gastroenterology and augmentative communication. Our speech, occupational and physical therapists can liaise with your local therapists and school team to provide specialized advice when needed. At the end of each visit, you and your doctors will receive and updated “care plan,” which is a document summarizing you child’s medical and physical needs and management plan.

For more information please contact:

Nancy Campbell at ncampbell@hollandbloorview.caor 416-425-6220 x3210