Neurofibromatosis

The Neurofbromatosis Program at the Gill Center is the largest pediatric Neurofbromatosis (NF) program in North Texas and the only regional program affiliated with the Children’s Tumor Foundation.  

Under the leadership of Laura Klesse, M.D., Ph.D., since 2008, the number of active patients in the program has doubled and continues to grow. The Neurofbromatosis program at Children’s Medical Center currently treats patients with all types of neurofbromatosis – the more common neurofbromatosis type 1 as well as the less common neurofbromatosis type 2 and schwannomatosis. The growth of our program refects the effectiveness of our comprehensive approach to patient care and our ability to leverage clinical trials to the beneft of patients. 

Coordinating Care

NF is the most common cancer predisposition syndrome in children. Managing this chronic disease year in and year out requires continuity of care with a focus on screening and access to subspecialists. To that end, the NF Program holds two clinics a week to accommodate annual or more frequent offce visits for all patients. These visits allow us to track patient health and serve as the coordination point for regular screenings – ophthalmological and neuropsychology evaluations are common, for example. 

Once a month, complex NF cases are brought before a comprehensive board of subspecialists to develop and coordinate medical treatment plans. The board includes not only medical subspecialists, such as neurologists, neuropsychologists and ophthalmologists, but also school services specialists and surgical subspecialists. Given this breadth of expertise, all NF-related issues receive the best possible treatment. 

Program Highlights

  • Largest pediatric NF program in North Texas
  • Only regional NF program selected as an affliate clinic of the Children’s Tumor Foundation  
  • More than 150 children evaluated for NF in 2012  
  • More than 470 active patients in the program  
  • Active enrollment for eligible patients on national NF clinical studies 

Contact Cancer and Blood Disorders

214-456-2382

Contact Cancer and Blood Disorders at Legacy

469-303-4400

Contact the Cancer and Blood Disorders Referral Coordinator

214-456-2978