Living with NF touches school, work, relationships, and family. These programs and partners can help.
Support at UCSF
- Sheri Sobrato Brain Cancer Survivorship Program — neurocognitive care, wellness classes, support groups, and peer support for people living with brain and nervous system tumors, during and after treatment. The Anna Kathrene Smith Fund supports resources tailored to young adults.
- Gordon Murray Caregiver Program — education, counseling, and practical support for family members and caregivers.
- Neuro-Cognitive Service — joint neuropsychology and neuro-oncology clinic for learning, attention, memory, and school or work accommodations.
- Young Adult Brain Tumor Support (YABS) — peer-led group for ages 18 to early 40s, meeting monthly on Zoom.
- Social work — help with insurance, transportation, school planning, and emotional support.
- Genetic counseling — what an NF diagnosis means for you and your family, including family planning options.
Moving to adult care
Transition usually begins in the mid-teens. Your pediatric and adult NF physicians will plan the move together and share your full history, so your care continues without a gap.
Understanding NF
When to call your doctor
Contact your NF team promptly if you notice:
- New or worsening pain, especially pain that wakes you at night
- A lump that grows quickly or becomes hard
- Changes in vision, hearing, or balance
- New weakness, numbness, or trouble walking
Trusted national organizations
- Children's Tumor Foundation — education, events, clinic directory, and research funding
- NF Network — advocacy and local support chapters
- Neurofibromatosis Therapeutic Acceleration Program (NTAP) — research updates