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Neurofibromatosis Network

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Neurofibromatosis Network

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Neurofibromatosis (NF) Network is the leading national organization advocating for federal funding.
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The NF Network is a non-profit 501(c)(3) organization and was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts. The NF Network provides opportunities for local NF organizations to share experiences. The network is a dynamic and growing open space for shared resources, development of new tools, and creation of innovative programs. It brings together groups from around the country to speak as one voice on national issues. Disclaimer: The information shared here is for general purposes only and should not be used as a substitute for professional medical advice. For any medical or mental health-related concerns, please consult a qualified health care provider.

10/31/2026

10/30/2026

The NF Network wishes you a safe and festive Halloween! While Halloween may be frightening, nothing is scarier than skipping your annual breast screening. With Breast Cancer Awareness Month coming to a close, it’s essential to take this time to emphasize your health, particularly for individuals diagnosed with Neurofibromatosis Type 1 (NF1). This month serves as a powerful reminder to prioritize early screenings, which can lead to more successful treatments and better health outcomes. Help spread awareness by sharing these images!

To learn more, visit: https://www.nfnetwork.org/news/network-news/focus-on-breast-cancer-awareness-for-women-with-nf1-26

If you’d like to discover more about Neurofibromatosis or find a supportive community, we encourage you to sign up here: https://www.nfnetwork.org/stay-informed-signup
Joining us means gaining access to important resources and connections that can aid you on your journey.

To contribute to this vital cause, please visit: https://www.nfnetwork.org/contribute/contribute-online

10/29/2026

🎃 The NF Network wishes you a safe and happy Halloween! What's scarier than Halloween? Missing our Miami Day with the Docs on November 14th! 👻 There won't be any tricks, but be sure to register early to ensure we have enough treats! http://weblink.donorperfect.com/NFMiami2026

NF patients and their families play for FREE.
For non-NF patients and their families, we are asking for a suggested donation of $30. Every gift makes a difference!

10/29/2026

Join the MyNFGuide Team for their Clinical Trial Results Release. Learn how they partnered NF experts with primary care to improve annual NF1 check-ups on November 4th, 7-8 pm EST. RSVP: https://forms.cloud.microsoft/r/DtKFT81Acv

Please note: This post will not be monitored for messages or questions by the MyGuide team. If you have any questions about the webinar or the My NF Guide Study, please contact the MGH study team directly at [email protected].

10/28/2026

We are just a little over a week away! Join the NF Network and members of our NF community as we rally in the fight against neurofibromatosis. Stroll, roll, walk or run... either way, come on out and have fun as we celebrate 15 years in Memphis, TN! Register here: https://raceroster.com/events/2026/114566/number-nfstrong-memphistn

10/27/2026

🎃👻 Did you know that Neurofibromatosis (NF) affects everyone equally, regardless of gender or ethnicity? This Halloween, let’s shed light on NF and break the scary stigma surrounding it! 💡✨ Join our community and stay informed about NF—because you don’t have to navigate your journey alone! 🕷️🖤

👉 https://www.nfnetwork.org/stay-informed-signup

10/26/2026

From our friends at Neurofibromatosis Northeast

Join NF Northeast for Living Forward with NF, an educational mini symposium focused on NF1 and NF2.

This event will bring together patients, caregivers, and family members for a day of learning, connection, and discussion. Attendees will hear from NF experts from the NF Clinic at Albany Medical Center and beyond, participate in educational sessions, and take part in an interactive patient workshop.

Event Details:
Date: Saturday, November 14, 2026
Time: 9:00 AM – 2:30 PM
Location: Hilton Garden Inn, Albany Medical Center
USS Albany Ballroom
62 New Scotland Avenue, Albany, NY

Who: Patients, caregivers, and family members
Please note: This program is intended for ages 14 and older.

Registration Now Open!

We invite you to join us for this opportunity to learn more about NF1 and NF2, connect with others in the NF community, and hear directly from NF experts.

Register here: https://www.nfnortheast.org/event/registration-now-open-living-forward-with-nf-mini-symposium-november-14-2026/

10/23/2026

October is Breast Cancer Awareness Month, an essential period for individuals to focus on their health, especially those diagnosed with Neurofibromatosis Type 1 (NF1). This month serves as a crucial reminder to prioritize early screenings, which can lead to more effective treatment and improved outcomes. Read more here: https://www.nfnetwork.org/news/network-news/focus-on-breast-cancer-awareness-for-women-with-nf1-26
If you would like to learn more about Neurofibromatosis or find support, we invite you to sign up here: https://www.nfnetwork.org/stay-informed-signup
Join our community to access valuable resources, information, and connections that can assist you on your journey.
To make a donation, please visit: https://www.nfnetwork.org/contribute/contribute-online/

10/22/2026

We are just a few weeks away! Want to join this year on November 14th? It's not too late to sign up! http://weblink.donorperfect.com/NFMiami2026
Event details: Join us for an NF educational session with the beloved Dr. Bauer presented by Alexion Pharmaceuticals US
This will be followed by a pickleball event presented by the NF Network.
NF patients and their families play for FREE.
For non-NF patients and their families, we are asking for a suggested donation of $30. Every gift makes a difference!

Address

PO Box 1530
Wheaton, IL
60187

Opening Hours

Monday	8am - 5pm
Tuesday	8am - 5pm
Wednesday	8am - 5pm
Thursday	8am - 5pm
Friday	8am - 5pm

Website

http://www.nfnetwork.org/

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