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Neurofibromatosis Midwest

Neurofibromatosis Midwest

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    “I received both of your packets in the mail yesterday and I wanted to say THANK YOU! The NF packet provided me with so much information I cannot thank you enough. When we got his diagnosis in November we had never even heard of NF so this has all been a bit of a whirlwind for us. Thank you for providing me with the tools to pass along to his teacher and my family! ”
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10 events found.

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Today
  • February 2025

  • Tue 25
    Featured February 25, 2025 | 6:00 pm - 7:00 pm CST

    Clinical Trials for Treating Pain in Schwannomatosis

    Join us to learn about current research on how best to treat pain for people with non-NF2 related schwannomatosis.  We'll...

  • March 2025

  • Thu 27
    March 27, 2025 | 8:00 pm - 9:00 pm CDT

    All About NF1, PN, and a Treatment Option

    Please refer to the flyer for information. Presented by Alexion Pharmaceuticals, Inc.

  • April 2025

  • Sat 26
    April 26, 2025 | 5:00 pm - 11:00 pm CDT

    SamJam Finale!

    The Rustic Venues 24720 N. Standard City Road, Girard, Illinois, United States

    SamJam Benefit Concert Aims to Reach $100,000 Milestone for NF Research Date: Saturday, April 26, 2025Time: 5:30 PM - LateLocation:...

    $40
  • Tue 29
    April 29, 2025 | 5:30 pm CDT

    Meet the MEKs: A Power Hour 4NF

    Learn about both MEK inhibitors, GOMEKLI and Koselugo, used to treat plexiform neurofibromas in NF1 with Dr. Shawn Damodharan from...

  • May 2025

  • Sat 10
    May 10, 2025 | 9:00 am - 1:00 pm CDT

    2025 Walk4NF Madison, WI

    Capital Brewery 7734 Terrace Avenue , Middleton, WI, United States

    Walk4NF Madison Details Get ready for the annual Madison Walk4NF and support those with neurofibromatosis! Plus, NF Midwest is celebrating...

  • Tue 27
    May 27, 2025 | 5:30 pm CDT

    Meet MEK Users: A Power Hour 4NF

    Thinking about starting a MEK inhibitor like KOSELUGO or GOMEKLI for yourself or your child? Already on one and want...

  • Sat 31
    May 31, 2025 | 9:00 am - 1:00 pm CDT

    2025 Walk4NF Columbia, MO

    Stephens Lake Park, Columbia, MO 2001 E Broadway, Columbia, MO, United States

    Walk4NF Columbia Details Get ready for the annual Columbia Walk4NF and support those with neurofibromatosis! Plus, NF Midwest is celebrating...

  • June 2025

  • Sat 7
    June 7, 2025 | 8:30 am - 1:00 pm CDT

    2025 Walk4NF Naperville, IL

    Grand Pavilion @ Riverwalk Park - Naperville 912 Honorary Sindt Memorial Ct, Naperville, Illinois, United States   +1 more

    Walk4NF Naperville Details Get ready for the 23rd Naperville Walk4NF - the grandaddy of them all supporting those affected by...

  • Fri 20
    June 20, 2025 | 6:00 pm - 8:00 pm CDT

    Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation

    International Museum of Surgical Sciences 1524 North Lake Shore Dr, Chicago, Illinois

    Neurofibromatosis and a Portrait of 1 in 3,000: Ashok Shrestha’s Transformation is a powerful exhibition featuring nine works of printmaking, drawing,...

    Free
  • July 2025

  • Thu 31
    July 31, 2025 | 6:00 pm CDT

    NF1 PN Educational Event hosted by Alexion

    Managing NF1 PN can be complex!Hear from a Patient Education Manager to learn more about neurofibromatosis type 1 with plexiform...

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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.

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