Your Voices & Stories Were Heard in D.C.!

On February 5th & 6th, 97 advocates from all across the country descended on Capitol Hill to participate in the NF Network Advocacy Program. There, we met with hundreds of offices to educate Congress on the importance of continued federal funding for NF research. With your support, we are continuing to make your stories heard on a national level and further advance the ongoing milestones in NF research. Learn more about the NF Network Advocacy Program and our annual Hill Visits here. Read more

SketchNF: My Colorful Life with Neurofibromatosis


In an effort to spread joy and awareness on neurofibromatosis to children and young adults with NF, SketchNF has created a coloring book that illustrates several real stories. Each book purchased allows SketchNF to donate 2 books back to over 30 clinics across the country.

University of Minnesota's Patient Perspective Study for Adults with NF1


Researchers at the University of Minnesota are conducting qualitative study to better understand experiences of families in terms of accessing or receiving treatments for behavioral health concerns. Learn more and see if you qualify.

Coffee for a Cause: The ScullyCoffee4NF Fan Fundraiser


Since 2017, fans of the actress and the TV series The X-Files have organized and implemented a social media-based fundraiser for the NF Network inspired by Gillian Anderson's iconic role as Dana Scully and Anderson's generous spirit.
Meet Sam Leary Award Recipient, Whitney!


Sam Leary was a close friend, a loving son, and a strong advocate for NF research - advocating for himself and the thousands living with NF. In his memory, in partnership with his mother Karen, we are proud to honor his life with the continuation of the Sam Leary Advocacy Scholarship Fund. Meet this year's recipient, Whitney.
Upcoming Events
SAVE THE DATE!
Quack for a Cure May 18, 2024 at Lake Herrick in Wheaton, IL
Check in begins 8AM | Race begins 9 AM
Free NF1 PN Virtual Educational Event
Tuesday, February 27, 2024
7PM ET
NF California's Virtual Game Night
Saturday, March 16, 2024
6PM PT
Docs Rock for NF
Saturday, April 6th
New Smyrna Beach, FL
Kansas City's #NFStrong 5K for Neurofibromatosis
Saturday, June 1st
Kansas City, MO
Boardman's #NFStrong 5K for Neurofibromatosis
Saturday, June 29th
Boardman, OH
Interested in learning more about neurofibromatosis?
Join our mailing list and stay iNFormed.
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?