Get Ready for GivingTuesday: Help Us Support our Growing NF Community

Each year in November, we're reminded of the kindness and generosity shown to the NF Network and the thousands of families we serve with essential programs and resources. The kindness and generosity that has been shared with the NF Network has allowed us to continue our important mission and serve the growing NF community like Autumn (pictured above). Amazing stories like hers can continue to happen with your continued contributions. Read more
Bringing new voices to the rare disease community


PatientWorthy is helping bring a voice to the rare disease community with their rare disease podcast, “Wait How Do You Spell That?” There, the podcasters talk about issues affecting people, rare and underdiagnosed conditions, and interview advocates from across the country.
Opportunity to Participate in an Independent Research Study to Tell Your NF1-PN Story


Bryter, an independent research company, is conducting a research study to understand about the lives of those (caregivers / patients) living with NF1-PN. The research is being sponsored by a pharmaceutical company and is designed to give the NF1-PN community the opportunity to tell their story about the lived experience.

Celebrating Our 2023 #NFStrong Events


As we wrap another incredible season of #NFStrong events, we'd like to extend our heartfelt gratitutde for everyone who joined and supported in whatever way they could. Join us as we reflect on what a year it's been and look ahead to 2024! 
Team Angel Fish: Remembering Jeff Balch


"I couldn't see very well and I was getting a lot of headaches," said fourth grader Jeff Balch. That was last fall, just before doctors discovered that a malignant optic nerve tumor was affecting Jeff's vision. "They told me if it got bigger it could destroy this eye," said Jeff, pointing to his right eye and sounding much older than his nine years. "I was a little nervous when I found out about the tumor, but not too scared."
Upcoming Events
Win (2) Premium Tickets to the Milwaukee Bucks vs. Orlando Magic NBA Game on December 21st!
Interested in learning more about neurofibromatosis?
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The mission of the NF Network is "to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness while offering hope and support to those who affected by NF."

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