Neurofibromatosis Network

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Neurofibromatosis Network

Neurofibromatosis Network

@nfnetwork

Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.

Wheaton, IL Katılım Şubat 2011
142 Takip Edilen3.5K Takipçiler
Neurofibromatosis Network
Happy Flashback Friday! 🐥💛 Let’s take it back to last year’s Ducky Dash 5K for NF—where the vibes were high, the outfits were quacktastic, and the community showed up in the best way. Lake Herrick in Wheaton, IL May 16, 2026 Race starts: 9 AM raceroster.com/events/2026/10…
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Neurofibromatosis Network
Neurofibromatosis Network@nfnetwork·
Join us for a morning of purpose and community! Saturday, May 30, 2026 Check-in: 9 AM | 5K Start: 10 AM Come enjoy a beautiful morning and stunning views, knowing that every step you take is making a difference! raceroster.com/events/2026/11…
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Neurofibromatosis Network
Neurofibromatosis Network@nfnetwork·
REMINDER: The deadline is about a week away to RAISE YOUR VOICE for Neurofibromatosis Research! Email YOUR members of Congress and ask them to support $25M for NF research in FY2027 through the Department of Defense and continued funding at the NIH. nfnetwork.org/advocacy/advoc…
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Neurofibromatosis Network
Neurofibromatosis Network@nfnetwork·
Join NF Northeast for an inspiring day at the Journey in Focus retreat for individuals and families affected by NF1! Saturday, March 28, 2026 8:00 AM – 4:00 PM The Desmond Hotel Malvern, 1 Liberty Blvd, Malvern, PA 📷 Register Here: weblink.donorperfect.com/JourneyinFocus…
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Neurofibromatosis Network@nfnetwork·
Join NF Families for the NF Strong Spring Concert! Woodstock Arts Event Green, 111 Elm St., Woodstock, GA, 30188 May 29th, 2026 5:30 PM - 9:30 PM Enjoy the incredible Dueling Pianos as you sing your heart out in an electrifying atmosphere! weblink.donorperfect.com/nfspringconcert
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Congressman Tom Kean
Congressman Tom Kean@CongressmanKean·
Thank you to Neurofibromatosis Network for stopping by my DC office this week! Neurofibromatosis is a genetic disorder that causes tumors to form on nerves throughout the body. For nearly three decades, @nfnetwork has built support for treatment and has worked toward finding a cure. I appreciate this group taking the time to share how Congress can support its mission of providing greater education, resources, and community for those living with NF and their families.
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Scullaaay!
Scullaaay!@ScullyCoffee4NF·
Allow me to reintroduce myself… #ScullyCoffee4NF is a fan fundraiser for @nfnetwork that started back in 2017. I’ll add everything you need to know in this 🧵 over the next couple weeks leading up to 2/23. If you’re a fan of #TheXFiles and @GillianA, give us a follow! 1/?
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Neurofibromatosis Network@nfnetwork·
Transitioning from pediatric to adult care can be challenging, but there are practical tools available to help. Join us as experts guide us on how to make this process as smooth as possible. Saturday, March 7, 2026 9:00 a.m. - 12:30 p.m. Leawood, KS weblink.donorperfect.com/AdultCare
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Neurofibromatosis Network@nfnetwork·
Today is National Rare Disease Day, a day that holds significant meaning for many individuals with NF. The zebra reminds us that we need to look beyond the obvious when it comes to health, considering the overlooked possibilities that might be affecting those we care about.
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Neurofibromatosis Network@nfnetwork·
RAISE YOUR VOICE for Neurofibromatosis Research! Now is the time to email YOUR members of Congress and ask them to support $25M for NF research in FY2027 through the Department of Defense and continued funding at the NIH. Ihttps://www.nfnetwork.org/advocacy/advocacy-action/
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Neurofibromatosis Network@nfnetwork·
Last year brought big ups and downs for federal NF research funding. As we head to our 30th Annual NF Network Advocacy trip to D.C., we’re hopeful—but vigilant. Funding isn’t guaranteed. This week, 100+ advocates will urge Congress to sustain critical NF research support.
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