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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.

Children's Team

Children's Team

Providers

Roger Packer

Roger Packer

Senior Vice President, Center for Neuroscience and Behavioral Medicine
Director, Gilbert Neurofibromatosis Institute
Director, Brain Tumor Institute
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

Ida's Story

ida teaser image

Ida Namazi is a bright, ambitious 21-year-old University of Virginia junior who dreams of attending law school and becoming a senator one day. What people might not know about Ida is that she was diagnosed with neurofibromatosis type 1 (NF1) when she was a toddler and has been battling the neurologic condition her whole life.

Read More of Ida's Story