Comprehensive Neurofibromatosis Clinic

The only one of its kind in Hampton Roads, CHKD's Comprehensive Neurofibromatosis Clinic provides patients and families with increased access to specialized support for their complex medical needs. Tailored to the individual, our team will offer attention to the full range of potential symptoms that arise in this population.

Tailored to the individual, our team will offer attention to the full range of potential symptoms that arise in this population, including neurological, developmental, dermatological, surgical, oncological, behavioral, rehabilitative and more.

Your Appointment: What to Expect

• Prior to your appointment, please complete and bring our Patient Information Questionnaire,  and copies of any relevant medical records or prior imaging results
• We will ask you questions about your child’s birth, developmental and medical history and family history as well as current and past symptoms of NF
• There will be a comprehensive medical (including skin) and neurological evaluation at each visit.
• An individualized plan for further evaluations and treatments will be created, which may include:
  • Genetic Testing
  • MRI (hyperlink)
  • EMG/NCS (hyperlink)
  • Hearing and/or Vision Assessment
  • Referrals to other pediatric specialty clinics, such as dermatology, nephrology, endocrinology, general surgery, neurosurgery, cardiology, and orthopedics, depending on the needs of the child
  • Physical, occupational and speech therapy
  • Neuropsychological or psychoeducational evaluation and behavioral health interventions
  • Educational accommodations and resources to maximize academic and developmental success
  • Pharmacological intervention when appropriate
  • Social and emotional supports for families coping with this chronic medical condition
• Referrals, appointments, and testing will be scheduled and facilitated and we will continue to monitor and treat your child and family