Pediatric neurofibromatosis program
For more information
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.
Additional Team Members
Genetic Counselor
I meet with families to review detailed family history information. I also organize the genetic testing process.
Medical Social Worker
I assess psychological needs of patients & assist with connecting families to local resources as needed.
Registered Nurse
I meet with patients and their family at the start of their appointment and answer their after-visit messages.
Support Group Advocate
I meet with patients and families to provide connections to the neurofibromatosis community.
What To Expect
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.