Appointments and Referrals

The Johns Hopkins Comprehensive Neurofibromatosis Center cares for adults and children with NF1, NF2-SWN and other forms of schwannomatoses (including LZTR1 or SMARCB1-related schwannomatosis and schwannomatosis NOS). Our team coordinates all aspects of NF Center scheduling, including appointments, changes and cancellations, to help ensure a seamless experience.

New Patient Appointments

To request an appointment, please use one of these options. If you use out-of-state or international concierge services, those teams will pass along your information to our team for scheduling.

Maryland Patients

Adult Patients

Adult patients with suspected NF1: If you do not have a confirmed diagnosis of NF1, you will first need to be evaluated at our genetics clinic because many disorders can be mistaken for NF1. Please call 443-997-1439 to schedule a genetic evaluation. Once a diagnosis is confirmed, we will be happy to see you at the NF Center.
Adult patients with confirmed NF1 or other confirmed or suspected forms of NF: Please call 410-502-6732. This line is open 8 a.m. to 4:30 p.m. EST, Monday through Friday. New patient registration includes basic demographic and insurance information, as well as the creation of a medical record in MyChart.

Pediatric Patients (infants to age 16)

Register with the NF Center: Please call 410-502-6732 to register your child with the NF Center. This line is open 8 a.m. to 4:30 p.m. EST, Monday through Friday. New patient registration includes basic demographic and insurance information, as well as the creation of a medical record in MyChart.
Register and schedule at the Kennedy Krieger Institute: Pediatric patients will also be referred to register and schedule with the Kennedy Krieger Institute Pediatric NF Program at the Johns Hopkins Comprehensive Neurofibromatosis Center.

Registering with both organizations helps ensure fully coordinated, comprehensive care and quick access to the appropriate specialists and testing.

Outside of Maryland

Johns Hopkins USA offers outpatient medical concierge services to help coordinate care and provide travel advice for patients who live far from a Johns Hopkins care location.

Maryland: 410-464-6555
Toll-free: 1-855-695-4872 
Email: [email protected]
Online form

International Patients

Johns Hopkins Medicine International coordinates care for patients who live outside of the U.S. or carry international health insurance, with the focus on personal, cultural and travel-related needs.

Phone:+1-866-518-4056
Online form

Upload Images

Before your appointment, you can use our image sharing portal to upload your recent X-ray, CT scan or MRI images if you have them.

Rescheduling or Canceling Appointments

Our team manages all scheduling, coordination, cancellations and rescheduling to ensure a seamless experience. To cancel or reschedule, please call 410-502-6732, or send our team a message via MyChart. If possible, please contact us at least two business days before your scheduled visit so that we can accommodate another patient from the waitlist. If you need to see multiple specialists, we strive to coordinate those visits on the same day, so canceling a visit greatly affects these coordinated appointments.

Please do not schedule or change appointments in MyChart. Appointments made by using MyChart scheduling will be canceled. All appointments and appointment changes should be made by contacting the NF Center team.

For Referring Clinicians

If your patient needs an urgent evaluation, please reach out via the Hopkins Access Line (HAL) at 410-955-9444, and ask for the neuro-oncologist on call. HAL accepts physician-to-physician referrals only.

To refer a patient to the Johns Hopkins Comprehensive Neurofibromatosis Center, please submit clinical records. Our team will coordinate intake, specialist scheduling and follow-ups to help ensure seamless, comprehensive care. To make the referral process as efficient as possible, please fax the following to 410-500-4271:

Patient name
Age
Date of birth
Contact information
Insurance Information and a copy of the card
Diagnosis
Reason for referral
Complete medical records with relevant testing