Celebrating 35 Years

What is Neurofibromatosis?

Learn more about the conditions that fall under the name “neurofibromatosis”.

NF in a Nutshell

Neurofibromatosis (NF) is a complex, often devastating set of genetic disorders with possible complications throughout the entire body that may also hold the genetic mystery to a host of other human ailments. Affecting approximately 1 in 2,500 people or 2 million people worldwide, it appears equally in all races, ethnic groups and both sexes.

A common complication for a person with NF is the growth of tumors on the nerves anywhere in and on the body. There are currently several separate, distinct disorders classified as neurofibromatosis. This includes neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. Others are also being identified.

If you or a loved one has NF, it is vital to be armed with a strong knowledge and understanding about the disorder and to see an NF doctor who is not only knowledgeable but also very experienced in the treatment of NF.

On this website and on links that take you beyond, we hope you find some of the answers that you are looking for.

National Institute of Health Fact Sheet ¿Qué son las neurofibromatosis?


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Understanding Neurofibromatosis 3rd Edition

This booklet may be downloaded for FREE. It may also be mailed FREE to any NF family or individual who is new to NF Midwest and resides in the NF Midwest service region of Illinois, Wisconsin, Indiana, Kentucky, Iowa or the east half of Missouri. If you are not in these regions you may contact the NF Network.

Download Now

Other Resources for Learning About Neurofibromatosis

Learning About Neurofibromatosis
National Humane Genome Research Institute

What is Neurofibromatosis?
Your Genes, Your Health; Cold Spring  Harbor Laboratory

Neurofibromatosis: Overview
Great audio of Dr. David Rothner (Cleveland Clinic) explaining neurofibromatosis 2008

What is NF?
Neurofibromatosis (NF) Center, Washington University

People Are Talking

Today I had the chance to get together with a friend that I haven't seen in quite some time, and we managed to talk for three hours about our boys, ages 9 and 12, both with NF1. On my way home, I thought about how blessed I have been and the blessing that has been NF Midwest. My family's lives have been tremendously impacted by the NF Midwest family.  That's truly what they have become to us-family.  Earlier this spring, we had the opportunity to go to the NF Midwest office in St. Charles, IL.  I'm not quite sure what I expected, but there were only three people running this organization that serves NF families in six states! Little did I realize that this visit would lead to the biggest adventure in all of my son 9 years, as he got to go to NF camp in Virginia. Not a day goes by since he came home that camp isn't mentioned. Even more remarkable than that is that those campers’ experiences were made possible by people who just want to make a difference. Making positive differences in the lives of people with NF is ultimately what NF Midwest represents to me. Of course, their contributions to research are extraordinary, and our family has seen first-hand how wonderful camp can be, but I am just as moved when I see a simple message from the staff at NF Midwest offering thoughts and support for someone who is scared and anxious about a test result. The uncertainties of NF can be too much for people to bear and can leave them feeling powerless (yes, I am speaking from personal experience). Our participation in NF Midwest has helped us take some of that power back, and has given us hope.

- NFmom

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