Neurofibromatosis Program Patient Stories

Your child will be cared for by one of the most accomplished teams of NF experts in the world. The team includes multiple subspecialties that include genetics, pediatrics, neuro-oncology, neuro-ophthalmology, ophthalmology and orthopedics.

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Patient story

Neurofibromatosis Type 1: Conor’s story
Conor, 16, and his parents have been traveling to CHOP from South Carolina several times a year since he was an infant for NF1 treatment and clinical trials.
Patient story

Neurofibromatosis 1: Carlee’s Story
Carlee, 4, receives treatment for the optic pathway tumor that caused vision loss. But she’s also gotten extensive psycho-social support.
Patient story

Hypothalamic/Optic Pathway Glioma NF1: Abby’s Story
When Abby was a toddler, she was diagnosed with a disorder that causes tumors and has been receiving treatments at CHOP. Abby is a Patient Ambassador for the 2016 Parkway Run & Walk. Read about her amazing efforts to help other kids undergoing chemotherapy.
Patient story

Neurofibromatosis Type 1: Cullen’s Story
Cullen Mitchell has neurofibromatosis, a genetic disorder. His parents, Kelly and Ken, credit the Neurofibromatosis Program at CHOP with helping them manage the complexities of caring for a child with this condition.