43 Years of Care and Ensuring No One Fights Alone!

2025 iNFo Fair Saturday, October 25th in Naperville, IL

Join Us ! This year, we are planning for a proactive, interactive, and conversational iNFo Fair.

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NO ONE FIGHTS ALONE!

Join NF Midwest so that no one fights alone! GIVE the gift of CARE.

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The Faces of Neurofibromatosis

See them, hear them, care about them!

Read Their Stories

Improving the Lives of People with Neurofibromatosis

Neurofibromatosis Midwest is dedicated to the increasing number of men, women and children challenged by neurofibromatosis. We’ve been a nonprofit 501(c)3 since 1982, and we are determined to continue our work to educate, comfort, improve clinical care and fund research for treatments and a cure. We are staffed by people with a personal interest in NF, with real experience and a determination and motivation to use precious funds in an efficient manner.

Our service area includes Illinois, Wisconsin, Indiana, Iowa, Kentucky and the eastern half of Missouri.


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Apply to the 2026 NF Young Adult Leadership Program

Are you a passionate young adult looking to make a difference in your community? The NF Young Adult Leadership Program…

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I Wish I Could Participate in the My NF Guide Research Study

Help Improve NF1 Care!Even Your Own Right Now!Participants Needed! I’m lucky to be able to go to an NF clinic,…

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Champions of the Fall 2025

Welcome to Champions of the Fall! This is an exciting new fundraising and awareness campaign from NF Midwest, running from October…

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NF1-TED Study Needs Participants!

I Just Joined the NF1-TED Study — and You Might Want To, Too I recently enrolled in the NF1 Tumor…

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iNFo Fair Recordings Posted

Recordings from the 2024 iNFo Fair are now posted on NF Midwest’s YouTube channel youtube.com/@nfmidwest. There may still be more…

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Stay Informed with NF Midwest See All NF Posts

The NF1 Cognitive Aging Project

Participants 40+ May Earn $40. Florida State University College of Medicine is conducting a study to investigate cognitive patterns and…

SMART-NF1 Project

Parent’s May Earn $10. Kids 13-17 May Earn $210. Florida State University College of Medicine is conducting a study to…

Apply to the 2026 NF Young Adult Leadership Program

Are you a passionate young adult looking to make a difference in your community? The NF Young Adult Leadership Program…

I Wish I Could Participate in the My NF Guide Research Study

Help Improve NF1 Care!Even Your Own Right Now!Participants Needed! I’m lucky to be able to go to an NF clinic,…

A Big Win For NF1-PN Patients in Europe

The European Commission has granted conditional approval for EZMEKLY® (mirdametinib) to treat symptomatic, inoperable plexiform neurofibromas (PNs) in patients aged…

Champions of the Fall 2025

Welcome to Champions of the Fall! This is an exciting new fundraising and awareness campaign from NF Midwest, running from October…

NF1-TED Study Needs Participants!

I Just Joined the NF1-TED Study — and You Might Want To, Too I recently enrolled in the NF1 Tumor…

CTF Unveils New Genetics of NF Page

NF Midwest is excited to share the Children’s Tumor Foundation’s new resource on the Genetics of Neurofibromatosis! Understanding the genetics…

Camp NF is July 13-July 19, 2025-Register NOW!

Started in 2004, Camp NF (originally Camp New Friends) is a condition-specific camp for children with NF (including NF2-SWN and…

May is NF Awareness and Action Month

This May, NF Midwest, and other NF organizations are coming together to turn awareness into action. We’re turning up the…

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