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.
Neurofibromatosis Program Patient Stories
Read stories about patients who have been cared for by the Neurofibromatosis Program.
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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.
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.
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.