Comprehensive Pediatric Neurocutaneous Disorders Clinic
Our Clinic and Providers
The Comprehensive Pediatric Neurocutaneous Disorders Clinic is an interdisciplinary clinic for infants, children, and adolescents who are either diagnosed or are suspected of having a neurocutaneous disorder.
Meets every other Monday afternoon.
Clinic Contact Information
- By Phone: (608) 263-6420, ext. 3
- MyChart: Go to uwhealthmychart.org and log into your account.
- Fax: (608) 263-0440
What are neurocutaneous disorders?
Neurocutaneous disorders are genetic conditions that cause tumors or lesions in various parts of the body, including the brain, spine, nerves, bones, blood vessels, skin and other organs. These are complex, lifelong conditions that require care from many specialists.
Examples of neurocutaneous disorders are:
- Neurofibromatosis Type 1 and Type 2
- Tuberous Sclerosis (Complex)
- von Hippel-Lindau disease
- Sturge-Weber syndrome
- Gorlin Syndrome
Preparing for Your Appointment
To make your clinic visit more efficient, please make sure that following items are faxed to (608) 263-0440 prior to your appointment:
- Pertinent medical records
- Pertinent laboratory results, pathology reports, radiology reports and copy of the radiology images in a CD-ROM or electronically into our PACS system
- Any necessary insurance referral Comprehensive Pediatric Neurocutaneous Disorders Clinic
Please contact our clinic coordinator at (608) 263-6420 and then push 3 when prompted if you have any questions about preparing for your appointment. Please contact our registration department at (608) 262-1400 or (800) 303-6114 with any change in address or insurance coverage. Contacting our registration department before your child’s appointment can help avoid delays.
When You Come to Your Appointment
- Patients must first register at the Outpatient Registration desk located on the second floor of the hospital. Please plan to arrive 20 minutes prior to your scheduled appointment.
- Please keep in mind that a typical clinic visit lasts from one to three hours.
- A medical assistant will check in your child. A check-in includes obtaining your child’s height, weight, pulse and blood pressure. You and your child will be taken to an examination room.
- After you are taken to an examination room, you and your child will be greeted by the clinic nurse coordinator, who will explore the main concerns regarding your child’s health and the goal of your visit. This will help us determine how we can most effectively address your concerns and questions.
- Depending on your symptoms and insurance coverage, your child will be seen by some or all our specialists in this clinic.
- The specialist(s) will review the available information, examine your child, and discuss the results and a plan of care.
Our team strives to provide families with comprehensive education regarding their child’s diagnosis and care. It is important that you feel comfortable with the care of your child before you leave the clinic. Always feel free to call us with any questions or concerns.