Comprehensive Neurofibromatosis Clinic
Neurofibromatosis (NF) is a genetic disorder that causes tumors to form on nerves anywhere in the body. If your child is diagnosed with NF, you want a dedicated team of experts to guide you in the most current NF management and treatment protocols. The Comprehensive Neurofibromatosis Clinic (NF Clinic) at Children’s Hospital Los Angeles provides the highest level of care.
Neurofibromatosis Clinic: Why Choose Us?
We’re part of the Children’s Tumor Foundation’s worldwide Neurofibromatosis Clinic Network (NFCN), which advances treatment and promotes education and research for children with NF. Our team of NF specialists are dedicated to providing excellence in NF clinical care based on the most current management guidelines. They also collaborate with other specialities to coordinate care for every patient based on their individual needs.
Our Team Approach to Neurofibromatosis in Children
Specialists from CHLA’s Division of Neurology and Division of Medical Genetics jointly run our NF clinic. After consulting with one of our neurofibromatosis experts, you may receive recommendations for additional care. Your child will receive comprehensive, coordinated treatment from experts who specialize in:
Children’s Hospital Los Angeles is a member of the U.S. Department of Defense’s Neurofibromatosis Clinical Trials Consortium (NFCTC). The consortium runs multi-center clinical trials that provide treatment options for a variety of medical complications associated with NF1 and NF2.
Participating in the consortium gives our patients access to the most current NF research and clinical trials. CHLA is the only NFCTC site on the West Coast.
Conditions We Treat
Our multidisciplinary team offers advanced treatment and support for neurocutaneous disorders, including:
- Neurofibromatosis type 1 (NF1): NF1 is the most common neurocutaneous syndrome. Dark brown birthmarks on the skin and freckling under the arms or in the groin are the most common skin findings in NF1. People with NF1 can also develop benign tumors on the peripheral nerves or nerves in the brain or spinal cord.
- Neurofibromatosis type 2 (NF2): This disorder can cause tumors to grow in the nerves leading to the ears, resulting in hearing and balance problems. People with this disorder also have an increased risk of developing tumors elsewhere in the nervous system.
- Schwannomatosis: This rare condition causes non-cancerous tumors to grow along the nerves of the central nervous system (brain and spine) as well as along the peripheral nerves. These growths can cause pain, numbness, weakness and sensory changes.