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 recently learned I have NF1 at the age of 29. Iam blown away with how fast these tumors are growing and haven't got a clue how to start, where to begin , or if I even want to know anymore [about] this . My heart is broken.... I took pride in my appearance and being a young female it's hard to explain to anyone that these are not warts or STDs. I just need help with excepting the reality of my condition, so thank you from the bottom of my heart for reminding me I'm not alone and giving information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions then I began with. So once again THANK YOU FOR CARING.
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.