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The Neurofibromatosis (NF) Clinical Program is dedicated to providing exceptional care to individuals with NF through groundbreaking research. We strive to change the standard of care for people with NF by seamlessly integrating research into our clinical practice.

We envision a future for people with NF that is less uncertain. Currently, when people visit the NF Clinic seeking a diagnosis, we cannot determine which aspects of NF they might develop throughout their lifetime. Through research, we seek to identify risk factors in individuals with NF1 that predispose them to specific medical and behavioral concerns. We believe that our findings will one day enable us to give our patients a clear understanding of how their NF will develop.

NF is a set of complex genetic conditions that can affect nearly every part of the body through the development of tumors on nerves in the brain and in other organ systems. While half of all affected people inherit the disorder, new cases can arise spontaneously through mutations (changes) in the NF genes.

Diagnosed most often in children and young adults, NF occurs worldwide, and in all races, ethnic groups, and both sexes. Treatments for NF are presently aimed at controlling symptoms, but surgery can help to alleviate any painful and disfiguring tumors.

National Referral Center

St. Louis Children's Hospital is a national referral center for individuals with neurofibromatosis. Physicians who would like to refer a patient to the NF Clinical Program may call our Physician Access Line at 800.678.4357.

For more information about neurofibromatosis, visit

Why Choose the Neurofibromatosis (NF) Clinical Program?

We understand NF affects all parts of your child’s life. And we know that each person with NF experiences life with it differently. Our program’s primary goal is to provide you and your child with the medical care, support and resources to address all the ways it impacts your life — whether they are physical, emotional or psychological.

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Jolene: Facing a Lifetime of Challenges

When Roberta Miller’s 7-year-old daughter, Jolene Green, required surgery to remove a tumor compressing her airway, she knew St. Louis Children’s Hospital was where her daughter needed to be.

We offer world-class care to children thanks in part to generous gifts from hundreds of people who have joined us in making health care better for all children. This philanthropic support enables us to fulfill our mission to do what's right for kids.

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