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About Our Practice

The Johns Hopkins Comprehensive Neurofibromatosis (NF) Center is a multidisciplinary clinic that combines the expertise of pediatric and adult neurology, neurosurgery, neuro-oncology and genetics. The center provides comprehensive clinical care to patients affected with neurofibromatosis type 1, neurofibromatosis type 2 and schwannomatosis. The goal of our center is to provide excellent clinical care in a collaborative environment and participate in research to further advance the understanding, management and treatment of these disorders.

Scheduling an Appointment (Adults)

To request an appointment, please call our program coordinator, Mary Brown, at (410) 502-6732 between 9 a.m. and 5 p.m. Monday through Friday. 

New Patients

  • New patients are those who have never been seen at the Johns Hopkins NF Center or those who have not been seen in over three years.

  • When calling for a new-patient appointment you will be asked questions about your diagnosis.  

  • New patients who do not have a formal diagnosis of NF1 (diagnosed by an expert) will be sent to the general genetics clinic for evaluation as a first step, since many disorders with similar clinical findings are mistaken for NF1 — we want to ensure you are getting the proper evaluation and care. Once a diagnosis of NF1 is confirmed we will be happy to see you at the NF Center.  
  • New patients with formal diagnosis of NF1 or confirmed and/or suspected diagnosis of NF2 or schwannomatosis will first be scheduled for an intake clinic appointment with our NF clinic coordinator and nurse practitioner, Shannon Langmead, R.N., M.S.N., C.R.N.P., C.N.R.N.

Intake Clinic Visit: What to Expect

  • Intake clinic appointments are available on Wednesdays or Thursdays. 
  • Before your visit, you will receive a new-patient questionnaire in the mail. Please complete this and bring it to your intake visit, along with any pertinent medical records (clinic notes, operative notes, pathology reports, imaging on CD). 
  • Your intake clinic appointment will take about 45 minutes. We will ask how you were diagnosed, and we will request your medical history and current symptoms. We will review records you have brought and then determine if there are any studies or evaluations that will make your new-patient appointment with our comprehensive team more valuable. We will also introduce you to our clinic and let you know what to expect at your upcoming new-patient appointments.  
  • You will leave your first visit with a plan and a schedule, including your new-patient evaluations as well as any other studies or evaluations needed. (Sometimes insurance restrictions limit us from scheduling imaging immediately following your visit. If this is the case, you will receive the information for these appointments in the mail.)

Comprehensive New Patient Visit: What to Expect

  • Your new-patient comprehensive visit will be scheduled for either the first Monday or last Friday of the month, barring holidays or clinic closings. 
  • During your comprehensive new-patient visit, you will likely have evaluations with several members of our team and may have additional imaging or consultations scheduled as well. We will review your imaging, perform a comprehensive exam, provide education and address your questions. We may talk to you about research opportunities available now or in the near future. You may also have the opportunity to participate in research during your visits if you are interested. 
  • This can be a very long day, and we try to build in time for you to get lunch, but please feel free to bring snacks. You may also want to bring something to help pass the time between visits or if we are running behind schedule (a book or magazine, or a friend to keep you company). We try our best to stay on time, but NF is complicated, and we want to ensure everyone is given the time they need during visits. We ask for your patience, and we promise that you too will get the time you need with our team to have all of your questions and concerns addressed.    
  • Please be prepared with any questions you want us to address.

Returning Patients

  • Follow-up appointments are available on Wednesdays or Thursdays.
  • Return patients are those who have been seen at the Johns Hopkins NF Center within the last three years.
  • Most patients are seen for follow-up at least annually. Our office will automatically schedule your annual visit at a similar date and time of day as your most recent visit to help keep both you and our team on track with annual follow-up. If the time and date do not work for you, please call to reschedule for a more convenient time. 
  • Sometimes you may require more frequent follow-up. Our providers will let you know this at the time of your visit, and the follow-ups will be scheduled for you, or you can call the NF Center to select a date and time. 
  • If you require an evaluation for new symptoms or new concerns, please call the NF Center to schedule an appointment. If you need urgent or emergency evaluation, please go to an emergency room (ER.) 

Scheduling an Appointment (Children)

New and returning pediatric patients with confirmed diagnosis of NF1, confirmed and/or suspected diagnosis of NF2 or confirmed and/or suspected diagnosis of schwannomatosis can request an appointment by calling the pediatric scheduling line at (410) 955-4259 between 9 a.m. and 5 p.m. Monday through Friday.

New patients who do not have a formal diagnosis of NF1 (diagnosed by an expert) will be sent to the genetics clinic for evaluation as a first step, since many disorders with similar clinical findings are mistaken for NF1 — we want to ensure you are getting the proper evaluation and care. Once a diagnosis of NF1 is confirmed we will be happy to see you at the NF Center.  

For All Patients

 
  • Please plan to arrive 20 minutes before your appointment to allow time for pre-registration.
  • Bring a list of all current medications, both prescription and over-the-counter (include names and dosages).
  • Bring your insurance cards.

Rescheduling Appointments and Cancellations

Our clinic is very busy, and unfortunately patients often have to wait several months for appointments. If you need to cancel or reschedule, please call us at 410-502-6732 as soon as possible, and no less than two business days before your scheduled visit, so that another patient can be seen. Cancelling or rescheduling a new-patient appointment may result in additional wait time.  

Prescription Refills

We ask that if possible, all prescription refills be handled at the time of your clinic visit. If you will need refills prior to your clinic visit, please email or call at least two weeks before running out of the medication to ensure you always have some available. Please do not rely on your pharmacy to contact us for a prescription refill. 

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Maryland Patients

For assistance with making an appointment, please contact the Johns Hopkins Comprehensive Neurofibromatosis Center at 410-502-6732.
Request an Appointment

Adult Neurology: 410-955-9441
Pediatric Neurology: 410-955-4259
Adult Neurosurgery: 410-955-6406
Pediatric Neurosurgery: 410-955-7337

 

Traveling for Care?

Whether you're crossing the country or the globe, we make it easy to access world-class care at Johns Hopkins.

Outside of Maryland (toll free)
410-464-6713

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Medical Concierge Services

International Patients
+1-410-502-7683

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Medical Concierge Services

 
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