Neurofibromatosis (NF) Network is the national non-profit serving individuals affected by neurofibromatosis. Leading NF Advocacy, Building NF Community.
Joined February 2011
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2,188 Photos and videos
Raising a child with neurofibromatosis (NF) comes with challenges that can impact every part of family life—and you don’t have to navigate them alone. us02web.zoom.us/webinar/regi…
#neurofibromatosis #NFdad
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Neurofibromatosis Network retweeted
Do you have questions about participating in #RareDisease clinical trials as a patient or caregiver? Join our webinar tomorrow at 2pm ET for answers.
RSVP now and submit your #ClinicalTrial questions: bit.ly/42U9OS6
Sponsored by @AlexionPharma
ALT Participating in Clinical Research: What Patients and Families Should Know. Webinar happening June 11, 2026 at 2pm ET. Featuring Julie Raskin from Congenital Hyperinsulinism International, patient advocate Katie Gillick, NORD's Tracey Sikora, and Dr. Paul Moots who is retired from Vanderbilt University Medical Center.
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Come celebrate, connect, and make a difference together! To register or donate, please visit weblink.donorperfect.com/nfs….
#ConnectingNF #Neurofibromatosis #NFConcert #SupportNF #HopeForNF #Fundraising #Awareness #WoodstockGA
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It is not too late to register for this weekend! The weather is forecasted to bring sunny skies and temperatures in the low 80s on Saturday, making it a perfect day for a walk. Registration is available here: raceroster.com/events/2026/1…
#neurofibromatosis #NFStrong #boardmanoh
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As summer heats up, let's reflect on NF Awareness Month! Throughout May, the NF community united to raise awareness, inspire connection, and strengthen our commitment to finding better treatments and a cure.
Read more: nfnetwork.org/news/network-n…
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We're thrilled to announce that SketchNF artwork will be showcased in the Rare Square exhibit! Enjoy a special preview starting July 7, and don't miss the official opening celebration on July 29. Admission is free!
nfnetwork.org/pages-news/one…
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Many people mistakenly believe that non-cancerous tumors are not concerning. While most tumors associated with NF are benign, they can still lead to significant health problems by pressing against nearby tissues. Learn more about neurofibromatosis: nfnetwork.org
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💙 The 2026 NF Strong 5K is next weekend! Join us as we stroll, roll, walk, or run to support the neurofibromatosis community. Register today: raceroster.com/events/2026/1…
#NFStrong #WalkForNF #NFNetwork
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Join SketchNF in empowering pediatric NF patients! We're raising funds for NF through children's artwork.
Key Dates:
- Auction: July 22-29
- Artwork Due: June 20
- Winner: Aug 1
Request your free art kit now! weblink.donorperfect.com/ske…
Let’s create hope! 💖 #SketchNF
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Raising a child with NF can profoundly affect your entire family, and you don’t have to navigate these challenges alone. Our webinar is designed for dads supporting children with NF while balancing work, family, and caregiving responsibilities. us02web.zoom.us/webinar/regi…
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Caring for a child with neurofibromatosis (NF) can be incredibly challenging, but you don’t have to go through it alone. Join our empowering webinar of panelists on June 10 at 12:00 PM Central Time us02web.zoom.us/webinar/regi…
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What a fantastic way to close out NF Awareness Month! Despite the rain, we had a great turnout for the KCMO 5K Walk for NF. Huge thanks to our presenting sponsor Alexion, sponsor SpringWorks and our co-hosts NF Central Plains, plus walk chairs Jill Meyer and Shelly Chavez!
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As we wrap up NF Awareness Month, meet Ananda, diagnosed with NF1 at one. He's a joyful warrior who raises awareness about neurofibromatosis. "Thank you for all your work! Sending hugs." To read more stories, visit: nfnetwork.org/pages-news/sto… #NFStrong #Hope
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KCMO 5K Walk for NF is THIS WEEKEND! 💙 Join us May 30. Kids tickets are back get $10 off adult registration with code BackTo2025! Register: raceroster.com/events/2026/1…
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Due to flooding and dangerous weather conditions in Georgia, our Spring Concert on May 29 has been postponed to July 17. All tickets remain valid for the new date. Please reach out to admin@nfnetwork.org for a refund if you can't make the new date.
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As we enter the final week of NF Awareness month, we would like to say thank you to SpringWorks Therapeutics for making our NF Awareness events possible this month!
#connectingnf #neurofibromatosis
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Let’s unite this month to raise awareness for NF! This graphic highlights some possible symptoms, but it’s important to remember there are many more. Every share and comment brings us one step closer to educating the world. Together, we can inspire change and make a difference!
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As we enter the final week of NF Awareness month, we would like to say thank you to Alexion Pharmaceuticals for making our Ducky Dash and our upcoming Kansas City 5K for NF possible this month!
#connectingnf #neurofibromatosis
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Join us on May 29 for our inaugural NF concert event and help support our mission to advance research, improve clinical care, expand education and awareness, and bring hope to everyone impacted by NF.
Register or donate today: weblink.donorperfect.com/nfs…
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