Pediatric neurofibromatosis program

Our team of specialists provides family-centered care for both children and adults with neurofibromatosis type 1, neurofibromatosis type 2, and schwannomatosis. Adult patients, children and their families, and the primary care provider work together with our physicians and medical team members to provide the comprehensive care needed for these complex conditions. Members of our team include physicians, a dedicated registered nurse, genetic counselor, psychologist, medical social worker, and a neurofibromatosis support group advocate.

Referrals to our program will get a full evaluation to determine if a diagnosis of neurofibromatosis type 1 can be made, or if further testing is needed. After the initial evaluation by a physician and possibly a genetics counselor, the patient and families may be seen by a psychologist, medical social worker, and/or neurofibromatosis support representative. Further testing, referrals or follow up appointments may be ordered. Due to the diversity of neurofibromatosis disorders, we coordinate referrals, if required, to a variety of specialists, which may include ophthalmology, oncology, orthopedics, neurosurgery, cardiology and plastic surgery. When testing is needed, results are shared directly with patients, parentsand the referring physicians to develop a treatment plan and schedule for future evaluations.