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.
Thank YOU for all that you do for people with NF and their families! It brings tears to my eyes to see how much was raised for this cause. My brother had NF which turned cancerous and he passed away February 10, 2011 after a not-so-easy life with NF. My sister and father also struggled with this disease, then cancer and passed away in 1991 and 2008 respectively. This was our first NF Walk and we look forward to next year's. We were impressed with the organization of the walk, the DJ, the food, the prize baskets, the facilities and of course all of the care that went into it. My remaining sister and I, and our families, are determined to help out in any way to help cure this disease or assist other families who have NF in their lives. We look forward to raising more funds next year and dressing up our team! Our goal as a team is to raise a lot more money next year!
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.