NF and schwannomatosis need lifelong care, and our center is built around a lifespan approach: one program that follows patients from childhood through adulthood. The move from pediatric to adult medicine is where continuity most often breaks down elsewhere. At UCSF, our pediatric and adult NF programs are co-directed as one team, so patients move between them without losing their care history, their specialists, or their support network.
Who this is for
Teens and young adults with NF1, NF2-related schwannomatosis, or other forms of schwannomatosis who are preparing to move, or have recently moved, from pediatric to adult care. Young adults diagnosed for the first time are welcome too.
How transition works
- Plan early. Your pediatric team starts talking about transition in the teen years, well before any age cutoff.
- Build skills. Teens learn to describe their condition, manage medications, schedule visits, and speak up in appointments.
- Structured hand-off. The Co-Directors coordinate the transfer of records, imaging, and surveillance plans between teams.
- Follow-through. After the move, the adult team confirms your surveillance schedule and keeps your support services in place.
Beyond medical care
Young adulthood brings its own questions. Our team helps with school and work accommodations, independence and insurance, relationships, and family planning, including genetic counseling about passing on NF.
Support for teens, young adults, and families
- Sheri Sobrato Brain Cancer Survivorship Program — includes the Anna Kathrene Smith Fund, which supports resources tailored to young adults.
- Gordon Murray Caregiver Program — support for parents and family members through the transition years.
- Adult NF Neuro-Cognitive Clinic — multidisciplinary clinic for patients 18 and older, so cognitive care continues after pediatrics, including college and work accommodations.
- Young Adult Brain Tumor Support (YABS) — peer-led group for young adults living with a brain tumor, ages 18 to early 40s, meeting monthly on Zoom.
- Social work — coordinated between the pediatric and adult programs.
- Genetic counseling — what NF means for family planning.
Young adults with brain tumors
Young adults with NF who also have a brain tumor can be seen in the UCSF Adolescent and Young Adult Neuro-Oncology Clinic, which cares for people ages 18 to 39, including adults with tumor types usually seen in children.