The CHOC Neurofibromatosis Program has been treating neurofibromatosis for more than 30 years and offers specialists in every area needed to treat this condition. With experts in genetics, neurology, neurosurgery, oncology, ophthalmology and orthopaedics, we provide comprehensive care and diagnostic testing to more than 150 children a year. Our program is the only one in Orange County and San Diego County to be named a member of the Neurofibromatosis Clinic Network with the Children’s Tumor Foundation.
We care for children with neurofibromatosis 1, which is the most common form, and neurofibromatosis 2, as well as other related rare conditions. Starting when a child first shows symptoms, we follow them regularly until a genetic diagnosis can be made around age 7. Appointments are typically held every six months until age 3, and then every year or as often as the child needs. We continually monitor a child to ensure they are meeting developmental milestones and to identify any issues that may arise. Most children with this condition live very healthy, normal lives.