The Multi-Disciplinary Tuberous Sclerosis Program at Boston Children's Hospital was started with the belief that children with Tuberous Sclerosis Complex (TSC) can benefit from care that is specially tailored to their needs. Even though the problems with the brain, heart, kidney and other organs seen in TSC are also found in other diseases, their diagnosis and treatment may be specific to TSC.

The Multi-Disciplinary Tuberous Sclerosis Program at Boston Children's Hospital is a team of pediatric specialists, who are dedicated to providing coordinated care for the TSC patients with multi-system problems. We have expertise in the areas of epilepsy, neurosurgery, neuro-psychology, cardiology, nephrology, ophthalmology, dermatology and genetics.

Our program is directed by a child neurologist, a nurse coordinator and a licensed genetic counselor in the Department of Neurology. We also have an educational consultant who helps support families in their child's education needs.

Patients are seen by specialists with the expertise that is appropriate for their particular symptoms. To learn more about each of the specialists, please see the faculty on this website.

                                           

The purpose of our program is not to replace but to assist the child's pediatrician with the management of the different aspects of TSC that can affect their patients life. We work closely with the child's pediatrician to ensure that each patient gets individually tailored care for all of his or her needs.

Clinical Team:
Back row: Mustafa Sahin, MD, PhD, Kitty Petty, MEd, LMHC, Jurriaan Peters, MD.
Front row: Shuei Kozu, MSW, Jen McCrave, RN, Lily Uihlein, MD, Marilyn Liang, MD, Carrie Mauras, PhD, Kira Dies, ScM, CGC.
   
To make an appointment for a patient to be seen in our Multi-Disciplinary Tuberous Sclerosis Clinic, please call Allison Robinson at 617-355-8994.

For additional information regarding our research programs, please contact our study coordinators:

  • Erin Carmody at (617) 919-4599 or by email at erin.carmody@childrens.harvard.edu
  • Meghan Dean at (617) 919-3499 or by email at meghan.dean@childrens.harvard.edu
  • Mia Diplock at (617) 919-1476 or by email at amelia.diplock@childrens.harvard.edu