TSC Clinics

Tuberous sclerosis complex (TSC) clinics play an important role in improving the lives of those affected by TSC.  TSC clinics provide multidisciplinary care for children and adults with TSC within their clinics or through a referral network of specialists within their health network.

Below is a list of Canadian TSC clinics that have received a TSC Clinic designation with the TSC Alliance TSC Clinic Network.  The TSC clinics have been peer reviewed and been given status designations in accordance with the TSC Clinic vs TSC Center of Excellence guidelines.

Quebec

CHU Sainte-Justine, University of Montreal

Director: Philippe Major, MD
Coordinator: Lucie Côté, RN
Age Range Seen: Children only under age 18 years.
Clinic Frequency: Thursdays, every 2-3 weeks.

To schedule an appointment call (514) 345-6510
For additional clinic information, visit the clinic website

Centre Hospitalier de l’Université de Montréal (CHUM) 

Director: Dr. Mark Keezer, MDCM, PhD (neurologist and epileptologist)
Clinic nurse-clinician: Vanessa Léger, RN
Age Range Seen: Adults 18 years and older.
For clinic information contact Vanessa at 514-890-8000 ext 26419.

Any new referrals require a formal consultation from either a primary physician or specialist.

Ontario

Comprehensive Tuberous Sclerosis Complex Clinic at The Hospital for Sick Children

Director: Elizabeth Donner, MD and Lauren Sham, MD
Co-Director: Maria Zak, MN, NP
Coordinator: Eugenia Law, RN
TSC Program Patient Navigator: Semira Kaul, RN

Age Range Seen: Children up to age 18 years
Clinic Frequency: One full Friday per month with additional clinics added as needed.

For clinic Information and to schedule an appointment, call (416) 813-7654 extension 201123 or email tsc.clinic@sickkids.ca

Families are invited to speak with their physician if they wish to be referred to the clinic. Their primary physician or specialist most involved in their child’s care can make a referral through the ARMs referral system in Neurology – TSC Clinic.

University Health Network

Director: Raymond Kim, MD, PhD
Co-Director: Monika Madan, MD
Coordinator: Nicole Forster, MSc, CGC

Age Range Seen: Adults 18 years and older.
Clinic Frequency: Weekly on Wednesdays

For clinic information contact Nicole Forster at (416) 586-4800 extension 4220 and to schedule an appointment contact adultgenetics@uhn.ca or Tabinda Nazeer at (416) 586-4800 extension 5454.

UHN Adult Clinic Brochure

Referrals to the UHN Adult TSC Clinic can be sent to:

The Fred A Litwin Family Centre in Genetic Medicine
60 Murray Street, Box 34, 3L-400
Toronto, Ontario M5T 3L9
Tel: 416-586-4800×4220
Fax: 416-619-5523

London Health Sciences Centre TSC Network

Director (Adult TSC Clinic): Andrew House, MD

Director (Pediatric TSC Clinic): Maryam Nabavi Nouri, MD and Andrea Andrade, MD
Coordinator: Andrew House, MD
Age Range Seen: Pediatric and Adults
Clinic Frequency: The local practice is to see patients as and when they come. Virtual options (videoconferencing, telephone) are available.

The TSCN is a consultative clinic for adult patients with TSC, made up of specialists from a number of disciplines. Our network includes Dr. Andrew House (nephrology); Drs. Ana Suller Marti, Michelle Lee Jones and Derek Debicki (neurology/epilepsy); Drs. Stephen Pautler and Patrick Luke (urology); Dr. Marco Mura (respirology); Dr. Wei Jing Loo (dermatology); Drs. Natalya Karp and Dervla Connaughton (genetics); Dr. Raymond Lee (dentistry). Referrals to any specialist in the TSCN provides an entry point to multidisciplinary care, while undifferentiated cases can be referred to Dr. House.

We are happy to accept referrals for any adult with TSC, and also to ease transition from pediatric to adult follow up for children in their late teens. For Clinic Information and to schedule an appointment call (519) 663-3167.

 

McMaster Children’s Hospital

Directors: Dr Robyn Whitney and Dr Elisabetta Trinari

Coordinator/Nurse Practitioner: Cynthia Sloan Birbeck, NP

Age Range Seen: Pediatric, ages 0-18yrs
Clinic Frequency: Monthly

Transition Program Available: Yes

Referral Details: Please refer to Dr Whitney at 905-521-7914, attention TSC Clinic, McMaster Children’s Hospital.

 

For a complete list of designated TSC clinics approved by the TS Alliance TSC Clinic Network, please visit:  https://www.tsalliance.org/individuals-families/tsc-clinics