NF Network Advocacy Program Educates Congress on Importance of Federally-Funded NF Research

The NF Network Advocacy Program prepares to kick-off their annual advocacy trip February 8th-12th. Since 1996, the NF Network Advocacy Program has played a vital role in securing over $380 million in federal research dollars for NF. Our work on Capitol Hill wouldn't be possible without you. Thank you for your continued support!


NF1 Research Study: iCanCope Mobile Application


Dr. Frank Buono's DoD-funded study sets out to understand the impact of the iCanCope - NF mobile application on individuals suffering from chronic pain due to NF1, with the goal of reducing pain symptoms. If you are currently experiencing NF1 pain, you are invited to participate in this clinical trial.
Update on NF1 Research from SpringWorks Therapeutics


SpringWorks Therapeutics is currently conducting a clinical trial to study an investigational MEK inhibitor called mirdametinib in patients with NF1 associated plexiform neurofibromas. Their update includes answers to those considering participation in the trial.
Halls of Congress Come Home: Virtual Hill
Visit Days


In a year like no other, advocates participating in the NF Network Advocacy Program will host their annual congressional meetings virtually. Gregg and Becky Erickson reflect on their experience in the program and share their thoughts on advocating from home.
Meet the Advocate:
Niall Covington


The goal of the NF Network Advocacy Program is to educate and advocate for and with the NF community. As the program grows, we are ecstatic to welcome new advocates who are ready to share their voice in Washington D.C. Meet one of our newest advocates, Niall.
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?