Understand NF

Neurofibromatosis (NF) is a group of genetic disorders that cause tumors to grow on nerves throughout the body. Learn about the three types, find specialized care, and discover treatment options.

What is NF?

The Three Types of Neurofibromatosis

NF affects people of all races and ethnicities equally, and can appear in families with no prior history of the condition. Understanding each type is the first step toward better care and support.

Neurofibromatosis Type 1 (NF1)

The most common form of NF, affecting about 1 in every 3,000 births. NF1 is characterized by café-au-lait spots on the skin, neurofibromas (benign tumors on or under the skin), and Lisch nodules in the eyes. Some individuals also experience bone deformities, learning disabilities, and optic pathway gliomas.

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Neurofibromatosis Type 2 (NF2)

A less common form affecting about 1 in 25,000 births. NF2 is characterized by the development of benign tumors on both auditory nerves (vestibular schwannomas), which can lead to hearing loss, tinnitus, and balance problems. Other tumors may develop in the brain and spinal cord.

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Schwannomatosis

The rarest form of NF, characterized by the development of multiple schwannomas — benign tumors that arise from Schwann cells — throughout the body. Unlike NF2, schwannomatosis does not typically involve vestibular tumors and hearing loss. Chronic pain is the most common and challenging symptom.

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Find a Doctor

Connect with NF Specialists

Finding a doctor who understands neurofibromatosis can make all the difference. Our directory connects you with experienced NF clinicians and comprehensive care centers across the country.

NF is a complex condition that often requires a multidisciplinary approach. The right specialist will coordinate care across dermatology, neurology, orthopedics, ophthalmology, oncology, and genetics — ensuring you or your loved one receives comprehensive, coordinated treatment.

Nationwide Network

Clinics and specialists in every region of the United States.

Vetted Specialists

Doctors experienced in diagnosing and managing all three types of NF.

Patient Reviews

Learn from others in the NF community about their care experiences.

Telehealth Options

Connect with NF experts remotely when travel is not possible.

Clinical Care

Clinical Care Options for NF1

While there is no cure for NF1 yet, a range of treatments and management strategies can help address symptoms and improve quality of life.

Monitoring & Surveillance

Regular check-ups with an NF specialist to monitor tumor growth, vision changes, blood pressure, and developmental milestones. Early detection of complications leads to better outcomes.

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Surgical Interventions

When neurofibromas cause pain, impair function, or raise cosmetic concerns, surgical removal may be an option. Plexiform neurofibromas may require specialized surgical approaches.

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Medication & Targeted Therapies

FDA-approved MEK inhibitors like selumetinib (Koselugo) can shrink plexiform neurofibromas in children. Clinical trials continue to explore new targeted treatments for NF1-related tumors.

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Pain Management

Chronic pain affects many people with NF. A comprehensive pain management plan may include medication, physical therapy, cognitive behavioral therapy, and complementary approaches.

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Learning & Developmental Support

Learning disabilities and ADHD are common in children with NF1. Early intervention, educational accommodations, and neuropsychological support can make a significant difference.

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Psychosocial Support

Living with a visible, chronic condition takes an emotional toll. Counseling, support groups, and NF community connections provide vital emotional and social support.

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Help Advance NF Research & Care

Your donation supports clinical care centers, accelerates research into effective treatments, and strengthens the NF community. Together, we can make a difference.