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The Faces of Neurofibromatosis

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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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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…

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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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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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Tumor Early Detection (TED) Study

The NF1-TED study is still recruiting and is looking for 1000 participants, age 18 and older. This study looks to…

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My NF Guide Study

Guide If you or your child has NF1 and have not visited an NF Clinic Network (NFCN) clinic in the…

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Stay Informed with NF Midwest See All NF Posts

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…

Walk4NF 2025: Join NF Midwest and Make a Difference

NF Midwest is back with its Walk4NF events, bringing communities together to raise funds and awareness for neurofibromatosis (NF) and…

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…

NF1 Plexiform Interview (RTI Health)

RTI-Health Solutions (RTI-HS) is inviting individuals, aged 18 years and older, who have been diagnosed with NF1-PN to participate in…

We Need Your Letters to Protect NF Research Funding

Once again, NF Midwest advocates will be in Washington, DC, to urge our Senators and Representatives to continue supporting research…

The Champion of the Fall Announced

NF Midwest recently concluded its 2024 Champions of the Fall fundraising campaign, a dedicated effort to support individuals affected by…

2025 Walk4NF Events

Neurofibromatosis Midwest (NF Midwest) is excited to announce the 2025 Walk4NF events, dedicated to raising awareness and funds for individuals…

Tumor Early Detection (TED) Study

The NF1-TED study is still recruiting and is looking for 1000 participants, age 18 and older. This study looks to…

NF Midwest December Update

Check out NF Midwest’s December update. If you are connected with us, you should have received this in an email!…

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