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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.