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The Gilbert Family Neurofibromatosis Institute

Contact number | 202-476-5181
Neurologist and Patient During Exam.

All of the Experts You Need in One Place

Treating neurofibromatosis is a team effort, and our providers are experts in their fields.

Meet the team

The goal of the Gilbert Family Neurofibromatosis Institute at Children’s National Hospital is to help children with neurofibromatosis type 1 or 2 (NF1, NF2) live more normal lives. It is one of the world’s largest programs, and the longest standing program in the United States. In fact, we have been changing the lives of children and families since 1982. This experience ensures that your child will have access to unparalleled expertise and care.         

Helping Children With Neurofibromatosis

Our dedication to your child’s health and well-being is why we’ve brought together some of the best and brightest minds on our medical and research teams. 

Highlights of our program include:

  • Expertise. Our team is led by Roger Packer, M.D., an internationally-recognized expert who brings his unique depth of experience with innovative research and effective diagnosis and treatment.
  • Team approach. From eye experts (neuro-ophthalmologists) to geneticists, our world-class sub-specialist team is experienced in meeting the complete, unique needs of each neurofibromatosis patient.
  • Seamless care. We offer several multidisciplinary clinics, giving your child access to a broad range of specialists in one central location. Learn more about our related departments.
  • Support. Having a child with neurofibromatosis can affect your entire family, and we are here to help. We offer services to meet your family’s emotional, spiritual and mental health needs. We were also one of the first programs in the world to offer a summer camp just for children with neurofibromatosis. Camp New Friends is the largest neurofibromatosis summer camp on the East Coast.

World-Class Neurofibromatosis Care at Children’s National

We offer highly specialized treatments for your child, some of which are only available at Children’s National. In fact, we have successfully treated conditions and complications that were previously thought to be untreatable.

Using a personalized approach, we coordinate treatments, therapies and support to relieve symptoms while protecting your child from long-term complications.

Highlights of the world-class neurofibromatosis care at Children’s National include:

  • Eye care. Steven Stasheff, M.D., within our Division of Neuro-Ophthalmology, specializes in caring for complications affecting your child’s vision. We offer treatments that can improve or save your child’s eyesight.
  • Cognitive rehabilitation. Kristina Hardy, Ph.D., and Karin Walsh, Psy.D., lead pioneering efforts to improve working memory and brain functioning through cognitive rehabilitation. This therapy uses computer exercises to strengthen specific brain activities.
  • New medications. Our unmatched clinical trials experience, under the leadership of Yuan Zhu, Ph.D., gives your child access to new medications, including targeted therapies. Targeted therapies prevent the progression of neurofibromatosis by interfering with molecules (targets) within the cells.
  • Adult care. Physicians board-certified in both pediatric and adult neurology ensure a smooth transition to adult care. If your child’s case is complex, he or she can stay at Children’s National. We are one of few pediatric programs in the country capable of caring for adults.

Conditions We Treat

Our team treats conditions related to neurofibromatosis, including:  

  • Intraspinal ependymomas
  • Learning disabilities and behavioral problems
  • Malignant peripheral nerve sheath tumors
  • Meningiomas
  • Optic nerve gliomas
  • Orthopaedic complications
  • Pediatric neurofibromatosis tumors
  • Plexiform neurofibromas

International Leaders in Neurofibromatosis Research

Our experts share a commitment to developing safer, more effective therapies that help reverse the course of neurofibromatosis, including NF1 and NF2. Through clinical trials, your child has access to new treatments that are only available in select programs worldwide. 

What distinguishes Children’s National is our leadership in some of the world’s most prestigious neurofibromatosis research networks.

Notable accomplishments include:

Contact Us

For more information or to make an appointment, call us at 202-476-5181.

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.

Maddox's Story

Neurofibromatosis Institute Team