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 one-day 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. These symptoms may also change as your child grows. They may also require chemotherapy or surgery.
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.
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Schedule on MyChart
Log in to MyChart at mychart.akronchildrens.org. Select the patient you are scheduling for and click "Schedule an Appointment." Don't have MyChart?
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Speak with a scheduler
330-543-2778 (KID-APPT)
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From the comfort of home or on-the-go, Quick Care Online is a convenient and secure way to connect with one of our pediatric health care providers about minor illnesses and common health issues.
Quick Care Online is available to anyone under age 18 in Ohio during convenient hours 7 days a week, 365 days a year using a compatible computer, mobile phone or tablet.
Locations
Akron Children's Hospital NeuroDevelopmental Science Center, Akron
Considine Professional Building
215 West Bowery Street
Level 4
Akron, Ohio 44308
Fax: 330-543-8054
More about this location...
Map & directions
Our Doctors/Providers
Matthew Ginsberg, MD
The James F. and Marguerite A. Pearson Endowed Chair in NeuroDevelopmental Sciences for Rare Diseases; Pediatric Neurologist
Ryan Heksch, MD
Pediatric Endocrinologist; Associate Program Director, M & M Conference and Residency Teaching Elective
Erin Wright, MD
Director, Neuro-Oncology; Director, Shannon E. Wilkes Targeted Therapy Program; Co-Director, Neurofibromatosis Clinic; Pediatric Neuro-Oncologist
Some of the Conditions We Treat...
neurofibromatosis type 1, NF1, neurofibromatosis type 2, NF2, schwannomatosis
