Real Life Stories and Treatment Updates Highlight May 20 Neurofibromatosis Education Symposium

Posted on May 11, 2017

Stacie Stapleton, M.D. with a patient in the Neurofibromatosis clinic

Johns Hopkins All Children’s Hospital hosts its second Neurofibromatosis Education Symposium on Saturday, May 20 for parents, family members and teens, along with health care professionals who care for neurofibromatosis (NF) patients.

NF types 1 and 2, along with tuberous sclerosis, are included in the category of neurocutaneous disorders. In these conditions, birthmarks and skin growths are sometimes associated with brain, spine and eye disease, making early identification of NF important so that children receive regularly scheduled follow-up with the appropriate pediatric subspecialists.

The Neurocutaneous Disorders Clinic at Johns Hopkins All Children’s Hospital has treated more than 500 patients, providing comprehensive care and related support services. The clinic is led by Stacie Stapleton, M.D., director of pediatric neuro-oncology, and includes additional specialists in neurology, neurosurgery, neuropsychology, ophthalmology and genetics.

The symposium will be held from 8 a.m. to 4:30 p.m. in the Outpatient Care Center on the Johns Hopkins All Children’s Hospital campus in St. Petersburg. Mothers of NF patients, a teen with NF and an adult with NF will share their own stories, and members of the Neurocutaneous Disorders clinic will provide updates on NF treatment, research and school and neuropsychological concerns in NF.

Attendance is free but RSVP is required by May 20 in order to accommodate seating and meals at the conference. Learn more or RSVP here.

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