The Kennedy Krieger Institute Pediatric Neurofibromatosis Program at the Johns Hopkins Comprehensive Neurofibromatosis Center provides comprehensive, interdisciplinary care for children with suspected or confirmed neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis.
Neurofibromatosis is a group of genetic conditions that can affect multiple organ systems, including the brain, nerves, skin, bones, and other parts of the body. Children with NF may also experience developmental, learning, behavioral, or emotional challenges. Because symptoms vary widely from child to child, early identification and coordinated, longitudinal care are essential.
Our program is designed to provide comprehensive, developmentally informed care from birth through adolescence, with planned transition to adult neurofibromatosis care at age 16 and beyond through our collaboration with the Johns Hopkins Comprehensive Neurofibromatosis Center.
We partner closely with families to support children across medical, developmental, behavioral, and educational domains, ensuring coordinated care throughout childhood.
Who We Serve
We provide expert care for:
- Infants, children, and adolescents from through age 16
- Children with suspected or confirmed NF1, NF2, or schwannomatosis
- Children with genetic test findings consistent with NF
- Children with clinical features concerning for NF, including café-au-lait spots, developmental differences, or family history
We also provide guidance and support for families navigating diagnosis, monitoring, and long-term care.
Our Approach
Neurofibromatosis presents differently in every child. Our care model emphasizes individualized, longitudinal care tailored to each child’s medical and developmental needs.
When patients first visit our program, they receive a comprehensive evaluation that may include:
- Medical and neurological assessment
- Developmental and behavioral evaluation
- Genetic counseling and testing (when appropriate)
- Neuropsychological or cognitive assessment
- Review of prior imaging and specialty evaluations
Following the initial evaluation, we develop a personalized care plan that may include:
- Ongoing medical monitoring
- Developmental and behavioral supports
- Therapy services
- School and educational guidance
- Referral to subspecialty providers as needed
Patients are typically followed longitudinally, with visits scheduled based on individual needs and developmental stage.
Our program also emphasizes planned transition to adult NF care. Beginning in adolescence, we work closely with families and the Johns Hopkins Comprehensive NF Center to ensure a smooth transition to adult-focused care at age 16 and older.