What if I can’t see an “NF Doctor”?
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.