Neurofibromatosis Comprehensive Center Designation

Throughout Children’s Hospital Colorado, it’s common to see many doctors and nurses of different disciplines come together to help children heal. In our Neurofibromatosis Program housed in the Clinical Genetics and Inherited Metabolic Diseases Program, our experts utilize a multidisciplinary approach to treat neurofibromatosis (NF1) — a common genetic condition that causes benign tumors to grow on nerves. This method encompasses specialists from our Genetics and Neurotherapeutics teams, Orthopedics Institute, Pediatric Neuroscience Institute, Pediatric Opthalmology, Center for Cancer and Blood Disorders and Department of Endocrinology to ensure a customized care plan.

Due to this extensive collaboration, the Children’s Tumor Foundation (CTF) — a nonprofit dedicated to improving research and care for kids with NF1 — designated Children’s Colorado as a Comprehensive NF Center, with NF expertise and a commitment to NF care, research, and education.

“For many years, we’ve used a multidisciplinary approach to neurofibromatosis (NF) with contributions from genetics, neurology and neuropsychology,” says Nick Foreman, MD, pediatric oncology-hematology physician. “With the advent of targeted therapy for NF, the Neurofibromatosis Therapeutic Program was added in 2020 with a weekly clinic designed to add the first directed therapy for NF1 and NF2 Schwannomatosis in our region.”

“We recognized the need to upgrade our Neurofibromatosis Program at Children’s Colorado to better meet the needs of our patients and their families and worked towards that goal. The Comprehensive Care Center designation is a culmination of those efforts,” says Dr. Aaina Kochhar, MD, Medical Director of the NF Program.

Along with the Comprehensive NF Center designation, Dr. Foreman received a grant to become a member of the U.S. Department of Defense’s Neurofibromatosis Clinical Trials Consortium (NFCTC). As a part of the NFCTC, our patients now have access to multi-center clinical trials that provide treatment options for complications associated with NF. Receiving the CTF’s highest designation and joining the NFCTC speaks not only to the outstanding care available, but also to how our providers’ connections across departments are instrumental in giving children with NF1 the best possible quality of life.