NF Network Advocacy Program is One Voice in DC

Author: NF Network, Breanna Bronowski-Stutsman
Published On: 1/20/2020

The NF Network Advocacy Program is the leading national Neurofibromatosis advocacy program working to secure federal funds for neurofibromatosis research.  The program consists of several NF patient advocacy organizations coming together as one voice on Capitol Hill, educating Congress on the importance of funds for NF research. 

In less than 3 weeks, the NF Network along with NF patient organizations and individual advocates from across the country will make their annual trip to Washington DC and will educate over 500 congressional offices.

Since the inception of the program in 1996, the NF Network Advocacy Program has stormed the halls of Congress with strong NF advocates, educating congressional offices about the importance of federal funding for NF research.  Advocates participating in this program have been the voice of the NF community on Capitol Hill for over 20 years and have been instrumental in generating over $330 million dollars dedicated to NF research. 

As we prepare for our annual trip to Washington, we are asking for YOUR help! As the national leaders in the promotion of government-funded NF research we need your voice to bring the NF message to Congress to secure federal funds for NF research. Share your NF story with the NF Network and we will bring your voice to Washington!  

Email your one page personal NF story to, and include a photo of you and/or your loved one affected by NF. Please be sure to also include your name, address, phone number and email at the bottom of your letter. To view some of our inspirational sample letters, please click here and here.

Together we are one voice in DC, and together we can take another step closer to finding better treatments and a cure to end NF!

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