Neurofibromatosis (NF) Clinic

Neurofibromatosis type 1 (NF1) is one of the most common genetic disorders, affecting approximately 1 in 3,000 individuals. Children with NF1 frequently have noncancerous tumors on their skin, but it can also affect other organ systems, such as your child’s skeletal, cardiovascular and nervous systems. To help manage this complex condition, Akron Children’s has created a neurofibromatosis (NF) clinic with specialists from developmental/behavioral pediatrics, genetics, neurology, oncology and ophthalmology. Other specialists are also available to support your child’s individual needs.

If your child has NF1, they may experience frequent headaches, uncontrolled seizures, ADHD, skeletal abnormalities, blood pressure issues, gastrointestinal problems and other conditions requiring the care of numerous specialists. They may also need chemotherapy or surgery. Symptoms may change as your child grows, so regular monitoring to address your child’s ongoing medical and developmental needs is important to minimize the risk of more serious complications.

The NF clinic allows your child to see all the specialists they need in one day, while providing enhanced care coordination and access to the most current treatments available. Patients are seen from birth to age 25. New cases are accepted until age 21.

The NF clinic also provides coordinated care for children with similar conditions. This includes NF2, which is less common than NF1 and usually diagnosed in early adolescence, and schwannomatosis, a condition that causes a different type of noncancerous tumor.

Patient education and support

The NF Clinic is committed to providing patient education to help you better understand your child’s condition and how to advocate for your child. Parent mentors are also available to serve as a resource for you, especially if your child has been newly diagnosed.