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.
It's been the one place I truly can find help and hope for a better future.. This place is more like family than anything else.. they truly want to find a cure and unlike someplace (aka goodwill) the profits go where they need to be.. (like goodwill head people)... these people real care and out reach to help find the right sources a person need... we need more support and more help and need the recognition like any other non profit groups.. aka the cancer society . . Because even this diease has cancer among the people my mom and identical twin died from brain cancer.. NFL needs more donations to function and move forward so they can help more people.. I cannot say enough about the help and hope given here...
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.