Finding the right doctor to oversee your or your loved one’s care is one of the most important steps you can take. Neurofibromatosis (NF) is a complex group of disorders that often requires a team of different specialists. The best approach is to have one doctor or clinical team with deep experience in NF to guide your journey.
What to Look For in an NF Doctor
We know that navigating the medical system can be challenging. Here are answers to a few common questions to help you find the best care.
While there’s no official definition of an “NF Doctor,” we recommend doctors who see many patients with NF, are involved in NF research, and attend NF conferences. These doctors are typically, but not always, neurologists, neuro-oncologists, or geneticists who have a high degree of experience, expertise, and passion for NF. They act as the “quarterback” for a patient’s care, referring them to other specialists like neurosurgeons, oncologists, and plastic surgeons who also have experience with NF.
It can be impractical to travel to a doctor with the highest degree of experience. Many doctors and clinics are capable of caring for patients with NF, especially if they are willing to consult with more experienced specialists. We encourage you to be proactive in your care by learning all you can about NF. If you have a concern, don’t hesitate to seek a second opinion or ask your doctor to consult with an expert. You can also read our article, “What to do if your personal physician doesn’t know a lot about NF?” for more guidance. Also, share the adult care or pediatric guidelines from our library.
An NF specialist has the best overall view of care options based on their experience and collaboration with other NF doctors. For example, a neurosurgeon might recommend surgery for a tumor, while an oncologist might suggest chemotherapy. An experienced NF doctor can provide a clearer, unbiased perspective on the best approach for your specific situation, ensuring your care is coordinated and comprehensive.
Find a Doctor
Nationwide
If you’re looking for an NF specialist outside of the Midwest, we recommend visiting NF Collective. This site was created through a collaborative effort with NF Midwest and other organizations to provide a single, reliable, and updated resource of NF providers across the country.
NF Clinics in the Midwest
Below are the established NF clinics and doctors that NF Midwest has supported and worked with for many years in our service area.
Illinois
University of Chicago Medicine
Ages: Adults & Children
Locations: 5721 South Maryland Ave, Chicago, IL 60637 & 14290 S. La Grange Rd. Orland Park, IL 60462
Co-Director: James Tonsgard, MD, Neurologist
Co-Director: Shawn Damodharan, DO, Neuro-Oncologist
Clinical Nurse: Deborah Ruckman, RN (773-702-6169 for clinical questions)
Appointments: 888-824-0200
Ann & Robert H. Lurie Children’s Hospital of Chicago
Ages: For children only; adults for a one-time consult
Location: 467 W Deming Pl, Ste 900, Chicago, IL 60614
Clinic Co-Directors: Robert Listernick, MD; Carlos Prada, MD; Miriam Bornhorst, MD
Clinic Coordinator & Genetic Counselor: Madison Hankins, MS, CGC
Appointments: 312-227-6120
University of Illinois Hospital
Ages: Children 0-18
Location: 1801 West Taylor St, Chicago, IL 60612
Clinic Director: Dr. Nikolas Mata-Machado
Clinic Coordinator: Annie Tan
Appointments: 312-996-7416
Ages: Adults 19+
Location: 1801 West Taylor St, Chicago, IL 60612
Clinic Director: Stefania Maraka, MD
Clinic Coordinator: Elizabeth Oremovich
Appointments: 312-355-0510
Malnati Brain Tumor Institute-Northwestern Memorial Hospital
Ages: Adults
Location: 710 N Lake Shore Dr, Abbott Hall, Suite 1123, Chicago, IL 60611
Neuro-Oncologist & Neurologist: Karan Dixit, MD
Appointments: 312-503-4724
Warrenville and Geneva Locations
Ages: Adults
Location: 4405 Weaver Parkway, Warrenville, IL 60555
Neuro-Oncologist & Neurologist: Robin Buerki, MD
Appointments: 630-352-5450
Indiana
Indiana University/Riley Children’s Hospital Neurofibromatosis Clinic
Ages: Adults & Children
Location: 575 Riley Hospital Dr., Hematology/Oncology MSA, Indianapolis, IN, 46202
Children’s Doctors: Steven Rhodes, MD & Larry Walsh, MD
Adults’ Doctors: Kathryn Nevel, MD & Jamal Mohamud, DO
Appointments (Children): 317-948-6641
Appointments (Adults): 317-944-0920
Iowa
University of Iowa Hospitals and Clinics Neurofibromatosis Clinic
Ages: Adults & Children
Location: 200 Hawkins Drive, Iowa City, IA 52242
Director: Alpa Sidhu, MBBS, PhD
Clinic Coordinator: Karin Panzer, MS, LGC
Appointments: 1-888-573-5437
Kentucky
University of Kentucky Neurofibromatosis Clinic
Ages: Adults & Children
Location: 740 S. Limestone Street, Lexington, KY 40536
Clinic Director: Donita D. Lightner, MD
Clinic Coordinator: Kim Osborne (859-218-5011)
Appointments: 859-323-5661
Norton Children’s Neurogenetic Clinic
Ages: Adults & Children
Location: 411 E Chestnut St, Louisville, KY 40202
Director: Dylan Brock, MD
Clinic Coordinators: Preeti Desaigoudar, CGC & Sydney Franklin, CGC
Appointments: 502-588-3650
Missouri
Children’s Mercy Hospital Comprehensive NF Specialty Clinic
Ages: Adults & Children
Location: 2401 Gillham Rd, Kansas City, MO 64108
Co-Directors: Jaclyn Peraino, DO & Dihong Zhou, MD
Appointments: 816-234-3490
Washington University School of Medicine NF Clinic
Adults: 4500 Forest Park Ave, St. Louis, MO 63108
Adult Clinic Director: Angela Hirbe, MD, PhD
Adult Appointments: 314-747-1171
Children: One Children’s Pl, Suite 2130, St. Louis, MO 63110
Children’s Clinic Director: David Gutmann, MD, PhD
Children’s Appointments: 314-454-6120
The Cardinal Glennon Children’s Medical Center Neurofibromatosis Clinic
Ages: Children
Location: 1465 South Grand Boulevard, St. Louis, MO 63104
Director: Ali Jamal, MD, Neurologist
Appointments: 314-577-5397
Wisconsin
American Family Children’s Hospital
Ages: Up to age 25
Location: 1675 Highland Ave, Madison, WI 53792
Clinic Director: Nicholas Pytel, DO
Clinic Coordinator: Connor Maschinot, RN
Appointments: 608-915-0520
Froedtert and Medical College of Wisconsin
Ages: Adults
Location: 8800 W. Doyne Ave. Milwaukee, WI 53226
Clinical Directors: Jennifer Connelly, MD & Eunji Yim, MD
Patient Coordinator: Julie McNamee (414-805-0994)
Appointments: 866-680-0505
Children’s Hospital of Wisconsin
Ages: For children; adults for an initial consult
Location: 8915 W. Connell Court Milwaukee, Craig Yabuki Tower (2nd Fl), WI 53226
Clinic Directors: Donald Basel, MD, Genetics & Leah Lalor, MD, Dermatology
Clinic Coordinator: Katie Knaebe, RN
Appointments: 414-266-3347 or 877-607-5280
Diana Haberkamp
Executive Direct/NF ParentDiana@nfmidwest.org630.945.3562If you can’t find a physician or have difficulty getting in to an NF Physician, Diana may be able to help. We’ll definitely help as best we can!