43 Years of Care and Ensuring No One Fights Alone!

Neurofibromatosis Midwest

Clinics, Awareness, Research, Education & Support

What We Do
“Mom found NF Midwest, she calls them our life ring and for good reason, they saved us in more ways than they or anyone else could imagine. We were no longer alone. They sent us information, talked to us gave us a breath when everyone else seemed to have taken it away. Trust me when I say my NF is much easier with them in my corner. ”
-Myshell
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“..we reminded ourselves to not get overwhelmed by the info and just to take it all in stride as much as we can. I think when it’s all new to you, it all sounds so scary. Which is why it was so nice to meet other families with happy kids and adults with NF. ”
-Sue
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“I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
-Jessica
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“{The Walk} was more like a party, than I walk. Enjoyed it so much!” – Kate
- Walk4NF
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“Thanks for giving me 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 than I began with. So once again THANK YOU FOR CARING.” – S.E. Age 29
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Non-Scientific Articles

Non-Scientific Articles Articles

Procedure Codes for Removing a High Quantity of Neurofibromas (Updated 2021)

NF Midwest | 2016 - Updated 2025
By Multiple Contributors

Leading the Fight for Options in Treating Dermal Neurofibromas: NF Midwest gets new procedure codes approved. For two years NF Midwest has…

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Gastrointestinal Tumors (GISTs) in NF1

NF Midwest | 2020
By James Tonsgard, MD

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Neurofibromas (What They are and Types of)

NF Midwest | 2015
By James Tonsgard, MD, University of Chicago

Tags: Tumors

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Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1

NF Midwest | 2020
By Andrea Gross, MD

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Medical Imaging for NF1: Radiation Exposure

By Allison Goetsch, MS, CGC

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What is Schwannomatosis?

NF Midwest

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Reproductive Options for People with NF1, NF2 and Schwannomatosis

Johns Hopkins University | 2012
By Amanda Bergner, MS CGC

People who themselves have been diagnosed with NF1, NF2 and schwannomatosis, or who have a child with one of these…

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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.