Finding the right doctor to oversee the care of your neurofibromatosis is the most important thing you can do for you or your loved one.
Finding the right doctor to oversee the care of your neurofibromatosis is the most important thing you can do for you or your loved one. The neurofibromatoses are very complicated disorders that require many different types of specialists. To oversee care of the patient with neurofibromatosis 1, 2 or schwannomatosis the best approach is to have one doctor or clinical team who are VERY experienced in NF and who have specialists that they regularly refer NF patients to.
If you are looking for an NF Generalist outside of NF Midwest’s coverage area, please go the nfcollective.org, a site created as a collaborative effort with NF Midwest and other organizations to provide a single, reliable, updated resource of NF providers.
You may find the article What to do if your personal physician doesn’t know a lot about NF? helpful.
There is no specific definition of an “NF Doctor”. We prefer doctors who see many patients with NF and are also involved in NF research and attend NF conferences. These doctors are generally, but not always, neurologists or geneticists. They treat hundreds of patients with NF1 and thus have a high degree of experience and expertise. (The number of patients seen with NF2 and schwannomatosis will naturally be a lot less). That being said, there are a number of well established “NF Doctors”/Clinics that NF Midwest has supported and worked with for many years. They are all also readily recognized as being involved in the national effort for NF care through involvement in conferences, clinical trials and studies. We list those doctors and clinics here.
NF doctors are the quarterbacks that have the overall picture of care for the patient with NF. When needed, they regularly refer patients to other specialists who in turn have gained a lot of experience with NF by working as a “team” with the NF doctor. These specialists may include neurosurgeons, orthopedics, oncologists, otolaryngologists, endocrinologists, plastic surgeons and many more. For the best coordinated care, it is very important to see an “NF doctor” first – if possible. While not being the ones to directly treat the complications of NF, the “NF doctor” has the best overall view of the options for care from experience and sharing with other “NF doctors”. For instance, a neurosurgeon may prescribe surgery for a tumor, while an oncologist may prescribe chemotherapy, but the “NF doctor” may have a clearer, unbiased idea of the best approach.
Again, there are degrees of “NF expertise”. Some doctors and clinics have benefitted by a high population of patients with NF and/or years of experience, but it can be impossible and often impractical to go to the ones with the greatest degree of experience. There are many doctors and clinics that are looking to build their population of NF patients and their experience. They are capable of caring for patients with NF, especially if they are willing to consult with the doctors who do have the vast experience. Look for doctors such as these if you cannot get in to see an “NF Doctor”. Also, be proactive in you or your loved one’s care by learning all you can about NF. If you have a complication or symptom that you are concerned about, don’t hesitate to move on to a doctor with more experience or ask your doctor to consult with one. You may also contact the NF Midwest office for other options.
The article What to do if your personal physician doesn’t know a lot about NF? may help you.
Children (ages 0-18 only)
Clinic Director
Dr. Nikolas Mata-Machado
Ophthalmologist
Lawrence Kaufman, MD, PhD
Clinic is held on Wednesday afternoons, second floor 2E Child & Youth Center.
Dr. Mata-Machado started seeing NF Patients through the University of Illinois Hospital in February 2018. Before that he had a clinic at Amita Health and served a fellowship with Dr. Tonsgard at the University of Chicago. Treats NF1 and NF2.
Appointments: 312-996-7416
Visit WebsiteAdults 19+
Clinic Director
Stefania Maraka, MD
Clinic is held on Wednesday mornings, 4th floor, 4E Neuroscience.
Appointments: 312-355-0510
Adults and Children
Clinic Director
James Tonsgard, MD
Clinical Nurse
Deborah Ruckman, RN 773.834.1927
Research Coordinator
Cynthia MacKenzie, RN 773.203.2344
Please call Deborah Ruckman for clinical questions or appointments at 773.834.1927.
Visit WebsiteAdults and Children
Clinic Director
James Tonsgard, MD
Clinical Nurse
Deborah Ruckman, RN 773.834.1927
Research Coordinator
Cynthia MacKenzie, RN 773.203.2344
Please call Deborah Ruckman for clinical questions and appointments at 773.834.1927.
Visit WebsiteChildren only; Adults for a one-time consult
Clinic Co-Directors
Joel Charrow, MD
Robert Listernick, MD
Pediatric Ophthalmologist
Janice Lasky-Zeid, MD
Clinic Coordinator & Genetic Counselor
Allison Goetsch, MS, CGC
NF Clinic Days: 1st three Thursdays of every month
Approx. # of NF1 patients seen in a year: 230
Approx. # of NF2 patients seen in a year: 2
Patient ages: 97% <18; 3% 18 yrs or older
Does the clinic see adults: No
Appointments: 312-227-6120 (The NF Clinic is held the first three Thursdays of each month)
Visit WebsiteAdults
Neuro-Oncologist & Neurologist
Karan Dixit, MD
Appointments: 312-695-4360
Visit WebsiteChildren
Clinic Directors
Lisa Smith, MD (Children)
Laurence Walsh, MD (Children)
Clinic Coordinator
Yvonne Hayden, RN
Appointments: 317-948-7450
Adults with NF1 & NF2
Neurologist & Neuro-Oncologist
Kathryn Nevel, MD
Appointments: 317-963-7230
Adults and Children
Director
Alpa Sidhu, MD
Clinic Co-Coordinators
Karin Panzer MS
Nurse Practitioner
Samantha Schutt, ARNP
Appointments: 319-356-2229
Visit WebsiteAdults and children
Clinic Director
Donita D. Lightner, MD
Clinic Coordinator
Kim Osborne
The clinic is located in Kentucky Neuroscience Institute. You can contact the Clinic Coordinator at 859-218-5011 or at kimosborne@uky.edu
Appointments: 859-323-5661
Adults and Children
Director
Alexander Asamoah, MD, PhD
Clinic Coordinator
Kelly Jackson, MS, CGC
Appointments: 502-588-0888
Visit WebsiteAdults and Children
Director
David Gutmann, MD, PhD
Clinic Coordinator
Erika Ramirez, RN, BSN
Appointments: 314-454-6120
Visit WebsiteChildren Only
Director
Amelia Kirby, MD
Clinical Nurse Coordinator
Julie Engel RN
Neurologist
Ali Jamal, MD
Appointments: 314-577-5397 (Clinic held 1st, third and 5th Wednesday morning of each month)
Visit WebsiteChildren
Clinic Director
Neha Patel, MD
Clinic Coordinator
Kristin Jakubowksi BSN RN
Appointments: 608-263-6420 (Select Option #3)
Adults with NF1, NF2, & Schwannomatosis
Clinic Director
Hendrikus Krouwer, MD
Appointments: 414-298-7250
Adults
Clinical Director
Fernando Santos Pinheiro, MD
Jennifer Connelly, MD
Physician Assistant
Magdalena Walentynowicz, PA-C
Hours: every other Friday 9 am – 12:45 pm
Appointments: 414-805-6804
Children; Adults for an initial consult
Clinic Directors
Donald Basel, MD, Genetics
Dawn Siegel, MD, Dermatology
Clinic Coordinator
Lisa Koneazny, RN
Appointments: 414-607-5280 or 877-607-5280
Visit Website
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