Neurofibromatosis Network Launches
NF Heartline

With the support of our partners at AstraZeneca, the NF Network is pleased to announce the launch of a new program, the “NF Heartline” – a hotline number designed to provide help and answer questions on your NF journey. The NF Heartline directly connects you with a knowledgeable NF advocate who can provide you with personalized support along your NF journey. 

FY22 House Appropriations Bill Includes $20M for NF Research


Thanks to your advocacy efforts, we are pleased to announce that the House Appropriations Committee has included $20M for the Neurofibromatosis Research Program (NFRP) in their Fiscal Year 2022 Defense spending bill! The NF Network extends our deepest gratitude to our letter signers, advocates, and supporters.
Optic nerve firing may spark growth of vision-threatening childhood tumor


Researchers have shown in a recent study of mice how the act of seeing light may trigger the formation of optic gliomas in young children who are born with NF1. The research team, funded by the NIH, discovered that the neural activity which underlies these signals can both ignite and feed the tumors.
Join #NFStrong in Cities Across the Country


Through family-fun activities and opportunities to connect and engage, our #NFStrong events provide a safe, positive, and entertaining environment to spread NF awareness and build new friendships with our NF communities across the country. The NF Network invites you to join us in a city near you, or register to walk with us virtually and race at your own pace!
Jillian and Crystal: No One Fights NF Alone


As a mom with NF1, Crystal knew there was a chance her daughter Jillian could also be diagnosed with this genetic disorder. Through medical challenges, Crystal has learned the importance of advocating for your NF care and is inspired every day by the strength of her daughter.
Upcoming Events
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."
Will you join with us?