Children's recently dedicated three new professorships in Neurofibromatosis research and clinical care.
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 Childhood 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:
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.
The Institute brings together pediatric professionals from a number of specialties, including:
"If we had not come to Children's National for a second opinion, our daughter might not be alive today."
Division Chief, Neuropsychology
Cheng Ying Ho
Division Chief, Orthopaedic Surgery and Sports Medicine
Senior Vice President, Center for Neuroscience & Behavioral Health
Division Chief, Plastic and Reconstructive Surgery
Clinical Director, Brain Tumor Institute
L Gilbert Vezina
Roger J. Packer, MD, Senior Vice President, Center for Neuroscience and Behavioral Medicine at Children’s National Health System, has been named to a three-year term to the new Research Advisory Network of the Pediatric Brain Tumor Foundation, reflecting his role as a leading researcher nationally into neurological disorders of children.
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