Learn, Connect, and Feel More Prepared

Be iNFormed by joining us online through Power Hours, Webinars, and Conversations!

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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.

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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!

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Learn More About NF

Barriers to Healthcare Access and Psychosocial Experiences in Adults with Neurofibromatosis Type 1

Offered by: University of Colorado AnschutzConducted by: Katelyn Glowinski, genetic counseling student, master’s program This research study is designed to gain a better understanding of healthcare barriers faced by adults with Neurofibromatosis Type 1 (NF1), as well as evaluate any associations between these barriers and your self-reported neuropsychiatric or mental health status. If you join…

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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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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)