Neurofibromatosis Institute Contact number | 202-476-5181

Child celebrates; Roger Packer, Neurofibromatosis Institute director, leads research to treat pediatric neurological disorders.

Gilbert Family Professors in Neurofibromatosis

Children's recently dedicated three new professorships in Neurofibromatosis research and clinical care.

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The Gilbert Family Neurofibromatosis Institute, one of the largest neurofibromatosis programs in the world, leads the medical field in diagnosis, evaluation, and treatment of children and adults with all the conditions that relate to this disorder.

Under the direction of Roger Packer, MD — one of the world's foremost experts in neurofibromatosis — the Institute is home to a multidisciplinary team composed of geneticists, neurologists, neuropsychologists, neurosurgeons, neuroradiologists, ophthalmologists, neuro-ophthalmologists, orthopedists, and researchers, who offer integrated care and effective therapies.

The Gilbert Family NF Institute has been recognized as a Neurofibromatosis Center of Excellence by the Children's Tumor Foundation, and is one of eight programs in the United States participating in the neurofibromatosis Clinical Trials Consortium, which Dr. Packer chairs. This consortium brings together experts from around the country to coordinate on national clinical trials.

As leaders in research and treatment, we offer our patients the most advanced care available on a full range of conditions:

Specialized Care

The Gilbert Family NF Institute actively follows more than 1,500 children and adults with all the conditions linked to NF. The institute coordinates weekly, multi-specialty clinics with one central location for patients and families to meet with specialists in genetics, neurology, and ophthalmology. From that clinic patients and families are referred as needed to specialists in oncology, neurosurgery, neuropsychology, and otolaryngology. We also offer genetic and recurrence risk counseling for NF patients and families.

The Institute also offers the largest NF summer camp on the East Coast for children between the ages of 7 and 16. Camp New Friends provides a fun and supportive environment for children and teens. For many, this is one of the few times a year when they socialize with patients and camp counselors like themselves and have the experience of just being kids.

Our Experts

The Institute brings together pediatric professionals from a number of specialties, including:

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.

Ida's Story

Neurofibromatosis Institute Team

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We design our health care with kids in mind, and deliver assurance when parents need it most. 

Contact Information

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We see children locally and globally who need the kind of specialized expertise and child-focused care we offer.

Meet the Team

Our providers represent medical and surgical specialties, family practice, and general pediatrics.

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Neurofibromatosis Institute Online Refill Request Form

Related Care Services

Pediatric specialists work closely to ensure an integrated approach to care for each child and family.