Neurofibromatosis Program

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Dr. Robert Listernick with patient Molly, 4 years old. (Photo credit: Amy Boyle Photography)

Lurie Children’s is a member of the Neurofibromatosis Clinic Network. Our Neurofibromatosis (NF) Clinic Team has demonstrated the ability to provide the specialty care needed by children with NF and their families. We see more than 300 patients with NF each year, and provide comprehensive care from the first clinic visit through the transition to adult care. We take a team approach to take care of children with all forms of NF, including NF1. 

Services include: 

Specialists

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From left: Katherine H. Kim, MS, CGC; Robert Listernick, MD; Joel Charrow, MD; Janice Lasky-Zeid, MD; Allison Goetsch Weisman, MS, CGC

What to Expect

The First Neurofibromatosis Clinic Visit

A child’s first appointment in our clinic begins before they arrive. Our team reviews the child’s medical records and one of our genetic counselors calls the family to discuss why the child was referred to us, what to expect at the appointment, and to review the child’s medical and family history.

Children are evaluated by both members of the Divisions of Genetics and Ophthalmology in the same clinic space. We pack a lot into the clinic visit, so families are told to plan for 2 ½ to 3 hours. Each clinic visit includes a complete eye exam and a thorough physical exam. We check bones and growth, skin, heart and lungs, and neurologic function. We also allow plenty of time to talk with the doctors and genetic counselor about the findings from the exams and possible next steps to be taken.

Annual Clinic Visits

If children are doing well, they are seen again in one year for another detailed body and eye exam to look for any complications of NF. However, if any concerns arise between annual visits, our team is always available to help the children and families in our care.

NF Transitions Program

At Lurie Children’s, we feel strongly that teens and young adults should understand how NF impacts their health and life. We want them to feel confident taking control of their own healthcare once they are in their early 20s. This process is called healthcare transition and it starts around age 14 years. We begin to include more education about NF and may even assign your teen “homework” to help them begin to learn how to fill prescriptions, call a doctor’s office and explain their condition to others. This process is important because it has shown to lead to better health outcomes in adulthood.

Make an Appointment

The neurofibromatosis clinic is held the first four Thursdays of each month at our Outpatient Center in Lincoln Park

467 West Deming Place
Suite 900
Chicago, IL 60614

To schedule a first-time or return appointment in the Neurofibromatosis Clinic, please contact the Division of Genetics directly at 312.227.6120

Note: Urgent appointments are available most Mondays and Fridays. Please call the Division of Genetics to speak with an NF provider if your child needs an urgent evaluation.

Questions? 

For more information, please contact program coordinator Allison Goetsch Weisman at 312.227.6120

Conditions We Treat