Learn, Connect, and Feel More Prepared

Join our upcoming Alexion webinars on productive conversations with healthcare providers: October 20 in English and October 21 in Spanish. Explore the details and register for the session that works for you.

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Upcoming Webinars Connect with Others Make a Difference

Productive Conversations with Healthcare Providers

Productive Conversations with Healthcare Providers

Explore practical ways to prepare for conversations with your healthcare team. English and Spanish Alexion webinars are available October 20 and 21.

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Ways to Meet and Learn from Others

Ways to Meet and Learn from Others

We Learn Best From Each Other. We Fight Best Together. Learn about the ways NF Midwest can connect you to community.

Join Our Community

You Can Make Difference

You Can Make Difference

There are many ways to give, beyond donating cash.

Become a Supporter

Walk4NF

Build and support the NF/SWN community while raising funds and awareness. Then celebrate with a casual walk with serious fun! If you can’t make it to one of our walk events, create an event of your own that fits your timeline, your location, and is something YOU want to do!

Learn More

Learn More About NF

Where Belonging Can Lead: Rachel’s Journey with NF Midwest 

Rachel was 13 when she first attended Camp NF.  At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF.  “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand…

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McKenna Had an Idea. A Few Weeks Later, More Than 100 People Showed Up! 

McKenna Smith had been thinking about doing something for the NF community. She wanted more people to understand NF, and she wanted to raise funds to help individuals and families find care, resources, support, and connection.  Then she saw NF Midwest’s Walk Your Way campaign and sent us a message.  From there, McKenna got to…

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Meet the Community. Share Stories.

Neurofibromatosis and schwannomatosis are complicated to say. Care, support, and navigating your journey with it doesn’t have to be. No one should fight alone. We’re here with you and in this together.

One in 2,000 People have some form of NF. They are rare genetic conditions.
3 Conditions NF is an umbrella terms for at least three condtions. Neurofibromtosis Type 1 (NF1), NF2-Related schwannomatosis (NF2-SWN), and other schwannomatosis (SWN)