Tuberous Sclerosis and Neurofibromatosis Clinic

The Children’s Mercy Comprehensive Tuberous Sclerosis and Neurofibromatosis Clinic is a nationally recognized clinic that provides comprehensive multidisciplinary care for children with neurocutaneous disorders such as tuberous sclerosis and neurofibromatosis. In this multidisciplinary clinic, specialists in dermatology, genetics, hemato-oncology, neurology, neurosurgery, neuropsychology, nephrology, social work and neuro-radiology work together to address each child's medical needs in a single visit. We work to coordinate multiple clinic visits/testing for the same day and also refer your child to appropriate specialties based on their evaluation.

Each health care provider strongly advocates for the highest level of care for each Tuberous Sclerosis and Neurofibromatosis patient. The health care providers from all subspecialties will meet annually to review new treatments, clinical trials and research for those with Tuberous Sclerosis and Neurofibromatosis. The health care providers participate and are encouraged to participate in clinical research as well as providing community and patient education.

Accredited by the Tuberous Sclerosis Alliance 

The clinic has received the Tuberous Sclerosis Alliance Accreditation and we have recently applied to be a NFCN (Neurofibromatosis Clinic Network) recognized site. We continue to strive to provide the best possible care possible based on standard practices and guidelines.  

What to expect during your appointment

Your child will be scheduled for a 120-minute appointment. There is a brief pre-management conference where all specialists discuss each child’s case and work together in the collaboration of care. Depending on the child’s need and pre-management discussion, the individual specialists will then see the child and address medical needs in a single visit. 

Diagnosis and treatment

Neuro-cutaneous disorders like Tuberous Sclerosis and Neurofibromatosis are diagnosed with physical examination, neuro-imaging, laboratory and genetic testing to understand the cause and individual needs of the child. Our specialists work together to offer comprehensive treatments that support your child’s full potential and abilities.