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Pediatric Plexiform Neurofibromas

Key points about pediatric plexiform neurofibromas:

  • Plexiform neurofibromas are a common complication of neurofibromatosis.
  • Diagnosed through physical examinations. However, the full extent of the lesion is best seen by MRI scans.
  • Approximately 75% of patients who undergo a complete removal of the tumor — without causing significant neurologic impairment or dysfunction — are cured.

Children's National Hospital is a member of the Department of Defense Neurofibromatosis Clinical Trials Consortium — of which Roger Packer, M.D. acts as group chair. Children's National completed a trial evaluating a new biologic agent, Pirfenidone. Through the Department of Defense Consortium, Children's is currently evaluating the efficacy of another biologic agent — Rapamycin — which is designed to inhibit the proliferation of plexiform neurofibromas.

Departments

Departments

Neurofibromatosis Institute

Learn more about our world-renowned Gilbert Family Neurofibromatosis Institute, which helps children with neurofibromatosis type 1 or 2 live more normal lives.

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Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you.

Share your birthday with a child. Celebrate your life, and give a chance to someone who desperately wants to have as many as you. Make it happen

Maddox's Story

Maddox's family

Zhen Chao, now called Maddox, was born in China with a genetic condition called neurofibromatosis type 1 (NF1) that can cause painful or disfiguring tumors called plexiform neurofibromas. Read about Maddox.

Read More of Maddox's Story