Our clinics are organized around the person, not the specialty. Your NF physician coordinates your care and brings in the specialists you need.
Pediatric NF Clinic
For infants, children, and teens with NF1, NF2-related schwannomatosis, or schwannomatosis. Care includes diagnosis and genetic confirmation, growth and developmental monitoring, eye exams for optic pathway glioma, learning and behavioral assessment, treatment of plexiform neurofibromas and gliomas, and access to clinical trials. Located at UCSF Benioff Children's Hospitals San Francisco and Oakland. Pediatric NF1 and Schwannomatosis Clinic at UCSF Benioff Children's
Adult NF Clinic
For adults with NF1, NF2-related schwannomatosis, or schwannomatosis, including adults diagnosed later in life and those transferring from pediatric care. Care includes tumor surveillance, MPNST risk monitoring, management of plexiform neurofibromas, vestibular schwannomas, and meningiomas, pain management, and access to clinical trials. Adult NF1 and Schwannomatosis Clinic at UCSF Health
Adult NF Neuro-Cognitive Clinic
Learning, attention, memory, and processing differences are among the most common features of NF1. Much less is known about how they affect adults compared to children — and after pediatric care ends, few adults are ever re-evaluated or supported.
For patients able to participate in neuropsychology testing, they have the option of participating in our multidisciplinary Neuro-Cognitive Clinic, dedicated to adolescents and young adults (AYA) and adults with NF, ages 18 and older. Neuropsychology and neuro-oncology work together in one clinic to:
- Evaluate thinking, attention, memory, and emotional health with neuropsychological testing
- Explain results in plain terms and connect them to daily life, school, and work
- Recommend practical strategies and accommodations for college, the workplace, and independent living
- Coordinate referrals for therapy, cognitive rehabilitation, and other support
- Track changes over time alongside your NF medical care
What we learn in clinic also helps build the evidence base for adult NF cognition, an area of care that is both understudied and greatly needed.
Learn about UCSF Neurocognitive Care Services
A lifespan approach to care
NF and schwannomatosis are lifelong, and what matters most changes with age. Our pediatric and adult teams work as one program, so each stage builds on the last.
| Life stage | Focus of care |
|---|---|
| Infancy and early childhood | Diagnosis and genetic confirmation, developmental screening, eye exams for optic pathway glioma, baseline tumor assessment |
| School age | Learning and attention evaluation, school supports, tumor surveillance, treatment of plexiform neurofibromas |
| Adolescence | Puberty and body changes, emotional health, learning to manage your own care, transition planning |
| Young adulthood | Planned move to adult care, college and work, relationships, family planning and genetic counseling |
| Adulthood | Tumor and MPNST surveillance, earlier breast cancer screening in NF1, blood pressure monitoring, pain management, quality of life |
Transition care for teens and young adults
NF does not stop at 18. Transition planning starts in the teen years, long before any age cutoff. Our pediatric and adult physicians work closely to coordinate transition of care, so the adult team knows your history before you arrive. We also address school and work, independence, insurance, and family planning. Learn about AYA and transition care
Conditions
Neurofibromatosis type 1 (NF1)
Lifelong surveillance and treatment for plexiform and cutaneous neurofibromas, optic pathway and other gliomas, bone and growth differences, learning and attention differences, and malignant peripheral nerve sheath tumor (MPNST) risk.
NF2-related schwannomatosis (NF2-SWN)
Coordinated management of vestibular schwannomas, meningiomas, and spinal tumors, with a focus on preserving hearing, balance, and function.
Schwannomatosis (non-NF2)
Care for SMARCB1- and LZTR1-related and other forms of schwannomatosis, including multiple schwannomas and chronic nerve pain.
Treatments and services
- Medical therapy: MEK inhibitors (selumetinib, mirdametinib) for plexiform neurofibromas; targeted therapy and chemotherapy for gliomas.
- Neurosurgery: Peripheral nerve surgery for neurofibromas and schwannomas; skull base surgery for vestibular schwannomas and meningiomas.
- Skull base otolaryngology: Hearing preservation and hearing rehabilitation, including auditory brainstem implants where appropriate.
- Plastic and hand surgery: Removal of cutaneous and plexiform neurofibromas; reconstruction.
- Dermatology: Evaluation and treatment of cutaneous neurofibromas.
- Radiation oncology: For selected tumors, with careful attention to radiation risk in NF1.
- Sarcoma oncology: Evaluation and treatment of malignant peripheral nerve sheath tumors (MPNST).
- Neuropsychology: Cognitive, learning, and attention assessment for children and adults.
- Imaging and pathology: Dedicated neuroradiology and neuropathology review, including whole-body MRI where indicated and UCSF500 molecular testing.
- Genetics: Genetic testing and counseling for patients and family members.