Tuberous Sclerosis Program
Who we are
If your doctor suspects that your child has tuberous sclerosis complex (also called TS or TSC), you probably have a lot of questions about what to expect and how your child’s condition will be cared for. Our Multi-Disciplinary Tuberous Sclerosis Program at Children’s Hospital Boston combines the expertise of physicians who specialize in treating the various complications that children can experience from having tuberous sclerosis.
What we do
Our program is led by child neurologist Mustafa Sahin, MD, PhD, and includes Children's pediatric specialists in Epilepsy, Neurosurgery, Psychiatry, Cardiology, Nephrology, Ophthalmology, Dermatology and Genetics. Each member of our team has special expertise in treating children with tuberous sclerosis. Your child can see all of us at the same location, and we work closely with one another to anticipate our patients’ symptoms and manage them diligently.
We also work closely with you, knowing that your family is a central part of your child’s care team. A nurse coordinator, licensed genetic counselor and educational consultant provide essential support to our patients and their families. And through our Family to Family Program, you can talk with other parents whose children have tuberous sclerosis.
Looking to the future
In addition to providing expert care for children with tuberous sclerosis, we are searching for ways to improve treatment. We conduct clinical trials of new drugs, studies of the complications that children experience, and genetic studies to find DNA abnormalities that may contribute to the disease. In addition, Sahin leads a laboratory in which he and his colleagues conduct basic research to better understand the disease and to find new strategies for treatment.
Boston Children’s Sahin and Cincinnati Children’s Krueger receive grant for tuberous sclerosis complex study
We’re pleased to announce that Boston Children’s Hospital neurologist Mustafa Sahin, MD, PhD, and Darcy Krueger, MD, PhD, of Cincinnati Children’s Hospital Medical Center, have received part of a $100 million grant from the National Institutes of Health as part of the Autism Centers of Excellence. The grant supports their research on tuberous sclerosis complex (TSC). This rare genetic disease causes children to develop benign tumors in their brain and other vital organs and increases their risk of developing autism. Currently, there is no cure for TSC, although there is treatment for the symptoms. Through this project, a consortium of TSC clinics at five pediatric hospitals will recruit infants diagnosed with TSC to track brain development and gain insights into how autism develops.
For more information
- For more information about our Multi-Disciplinary Tuberous Sclerosis Program, including our research and family conferences, please visit our website.
- To make an appointment, please call us at 617-355-8994.
For additional information about our research programs, please contact our study coordinators:
- Kira A. Dies: 617-919-3009, email@example.com
Rachel Friedman: 617-919-3499, firstname.lastname@example.org
- You can find general information about coming to Children’s here.
- You may also want to visit the Neurology department website for general information including billing.
- Health professionals can also visit the Neurology department site for information on training programs and continuing education.
Targeting developmental delays
Our team in the Multi-Disciplinary Tuberous Sclerosis Program is conducting groundbreaking clinical trials of a medication for TSC. Read more in Can drugs improve cognitive deficits in developmental disorders?.
TSC causes medical complications that need close care. But it can also create unique educational needs, and those can often feel the most overwhelming. Our team includes an educational consultant who helps families anticipate their children’s needs, especially during transitions from one stage of education to the next.