Neurofibromatosis and Schwannomatosis

The Neurofibromatosis Clinic is a multidisciplinary team of experts who specialize in the diagnosis and management of neurofibromatosis. Our specialists include neurologists, geneticists, genetic counselors, a neuropsychologist, general oncologists, neuro-oncologists, orthopedic oncologists, neuro-otologists, neuro-ophthalmologists, and neurosurgeons with expertise in managing brain and spinal tumors.

Clinical Care

The clinic’s care providers take a personalized, family-centered approach to your child’s treatment, often seeing families with more than one affected member.

UNC’s state-of-the-art imaging facility includes the only MRI/PET machine in North Carolina. A single imaging study can identify tumors throughout the body, allowing for the monitoring of tumor growth or detection of malignant tumors. The clinic provides treatment for many different types of NF tumors and participates in studies of new drugs to treat tumors caused by neurofibromatosis.

Recognition

In recognition of the UNC Neurofibromatosis Clinic’s quality of care, expertise, and research, the Children’s Tumor Foundation has designated the clinic as a member of their nationwide network of clinics.

The Neurofibromatosis Clinic Network (NFCN) is the first nationwide network in the US and Canada dedicated to improving clinical care for people living with NF. Established by the Children’s Tumor Foundation (CTF) in 2007, the NFCN recognizes clinics that provide comprehensive, multidisciplinary care, promote patient and family education, and support participation in clinical research and the NF Registry. Today, the network includes more than 70 clinics across North America.

The NF Clinic at the University of North Carolina Hospitals is recognized as an NF Comprehensive Center within the NFCN. This designation reflects the clinic’s high patient volume, active engagement in NF research, and commitment to education. With deep expertise in all types of NF, the UNC clinic is dedicated to advancing care, research, and support for individuals and families affected by neurofibromatosis and schwannomatosis.

Referrals & Appointments

To make an appointment, please have your primary care provider send us a referral.

Primary Care Providers should specify Neurofibromatosis Clinic as the reason for the referral. 

• Providers who have access to UNC CareLink can submit a referral online. If you would like to enroll, click on the link and select “Request an Account.” You may wish to download an overview of the referral portal or view a step-by-step guide on how to sign up.
• If you don’t have a UNC CareLink account, please fax a completed referral form, including a specific referral question and records to (984) 974-KIDS. Please call (984) 974-PEDS if you have any questions.

For more information on the referral process, please visit the Referring Provider Resources page.