Making sure those with NF get the best care is our top priority and as such we work to identify and support clinics in our region.
We now have 12 clinics in our six state region of Illinois, Indiana, Iowa, Wisconsin, Kentucky and east Missouri. Every state now has at least one clinic seeing adults and children. NF Midwest works closely with these clinics to ensure that the NF community gets the best care.
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.
NF Midwest is working on new programs to directly support clinics and those who go to NF clinics in our region. Currently we provide educational material to clinics and work as the voice of the NF community to the clinics.
I would like to thank y'all for this information on NF1. My son just turned 4 in April and was just recently diagnosed with neurofibromatosis type one which I have never heard of until my step mother said something to me about the spots all over his body and the two eye surgery's he has had in the past. This information has taught me a lot on this. Now we are seeing an NF1 doctor in Louisville and I just wanted to thank y'all for this [website] it helped a lot.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.