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.
im in kentucky , when they said my son tested positive for nf1 i was lost and didnt know where to turn , had very little info on what to do next or who to even talk to on how to help my child . they sent me an info kit that was very well organized and called me without asking to guide me and just give me pointers etc , thank you so much
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.