New Pediatric Neurofibromatosis Program Expands Care

Author: Johns Hopkins CLINICAL CONNECTION

Published On: 8//3/26

For children born with neurofibromatosis (NF), a group of genetic conditions that can affect multiple organs of the body, receiving proper medical treatment is just one part of the equation. That’s because NF also brings a host of developmental, behavioral and emotional challenges — from autism to ADHD to depression — which vary greatly from child to child.

The launch of a new pediatric NF program at Kennedy Krieger Institute is a strategic expansion of the well-established Johns Hopkins Comprehensive Neurofibromatosis Center. Founded over 20 years ago, the center is a global leader that has helped set care standards and improve outcomes for people with NF, both through direct clinical care and field-changing research. 

The addition of the Kennedy Krieger Institute Pediatric Neurofibromatosis Program at the Johns Hopkins Comprehensive Neurofibromatosis Center gives families direct access to a full range of developmentally informed services for children with NF, from birth through adolescence. 

“NF is one of the most common rare diseases, occurring in about 1 in 2,600 children,” says program director Stephanie Morris, a pediatric neurologist at Kennedy Krieger. “The way each child presents with NF is highly variable, even within the same family, so it’s crucial to provide individualized, multidisciplinary care. Our new program means families can get everything they need here on one campus in East Baltimore.”

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