What is the NF Network Advocacy Program
NF Network Advocacy Program - Kim Bischoff, Executive Director of the Neurofibromatosis Network
Over the last 25+ years, NF research has exploded and expanded in ways we used to only imagine. From our first FDA-approved drug to exciting new developments and therapies in the pipeline, our work wouldn’t be possible without the hundreds of advocates and thousands of voices like you participating in the Neurofibromatosis Network Advocacy Program.
Since 1996, inspired by her daughter Jenni, Kim Bischoff – Executive Director of the NF Network – has led the charge in the fight for better treatments and a cure for neurofibromatosis. She has been a vital voice for federal funding for NF research, sitting on the Congressionally Directed Medical Research Program Panel as a consumer for both peer-reviewed and programmatic-reviewed NF research proposals for the last decade. Her presence and participation on that panel has been essential to efficiently spending our allocated research dollars to ensure we are expanding on and investing in promising studies and therapies.
Each year in February, Kim along with advocates from across the country, descend on Capitol Hill to educate Congress on the importance of continued federal funding of NF research. Kim shares her story and experience, along with the stories of thousands living with neurofibromatosis, with the hope of one day having a cure for all types of neurofibromatosis.
NF Network Advocacy Program
The Neurofibromatosis Network Advocacy Program is the leading national NF advocacy program working to secure federal funds for NF research. Advocates from across the country come together in Washington D.C. and unite as one voice for the NF community, educating Congress on the importance of these research dollars. Joined by several NF patient advocacy organizations, the program is advised by a Leadership Council to ensure our message is clear and strong in the fight to end NF. Over the last 25+ years, the NF Network Advocacy Program has been instrumental in generating over $400 million dedicated to NF research.
The NF community may have its ups and downs but we won’t ever lose our fight. This community is 120,000 strong. This community is resilient. This community inspires action.
For 25+ years, Neurofibromatosis Network has led the charge in advocacy. We won’t ever stop fighting for you, and we won’t ever stop fighting for NF research.
NF advocates urge their senators and representatives to support NF research funding through the CDMRP and the NIH. Continued congressional funding is critical to the clinical trials that may ultimately lead to a treatment and cure for NF and related disorders. It is with your support and the help of our NF advocates that the funding programs become possible.
You can play a vital role in securing federal funding for NF research. Our advocates represent the voice of the NF community in Washington D.C. and fight for a future without neurofibromatosis. If you are interested in joining the NF Network Advocacy Program Hill Visit Days or scheduling a meeting with your member of Congress, please give us a call at 630-510-1115, or email us at admin@nfnetwork.org.
CDMRP NF RESEARCH PROGRAM
The Congressionally Directed Medical Research Program (CDMRP), ran through the Department of Defense, was created in 1996. The Neurofibromatosis Research Program was one of the first programs to be founded under this new arm and was essential in the process for developing our first ever FDA-approved drug. The CDMRP-NFRP is an efficiently run national program that offers cutting edge awards targeted directly towards neurofibromatosis research through a competitive peer-review process to fill gaps in ongoing research, complementing initiatives sponsored by other agencies, such as the National Institutes of Health (NIH).
NATIONAL INSTITUTES OF HEALTH
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives. Studies and research done at NIH help develop foundational science that is then supported through additional funding with private grants or financial support through the CDMRP-NFRP.
Participating Organizations of the NF Network Advocacy Program
Leadership Council
Participating Organizations
NF ADVOCATES PHOTO GALLERY
Click the photo to view photos from the 2025 NF Network Advocacy Program.
How is NF Research Funded
Since 1996, NF research has been funded by Congress at the Department of Defense (DOD) through a Congressionally Directed Medical Research Programs (CDMRP) called Neurofibromatosis Research Program (NFRP) and through the National Institutes of Health (NIH).
The Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH) work together on neurofibromatosis research in several ways, including:
- Coordination
- The two agencies regularly communicate to avoid overlap in their funding
- Strategic planning
- CDMRP programs develop strategic plans that include research priorities, coordination with other organizations, and how to track research outcomes
- Multidisciplinary teams
- CDMRP research programs are managed by multidisciplinary teams that include experts from the NIH, as well as other organizations
CDMRP NF RESEARCH PROGRAM
The Congressionally Directed Medical Research Program (CDMRP), ran through the Department of Defense, was created in 1996 and is an efficiently run national program that offers cutting edge awards targeted directly towards Neurofibroatosis research through a competitive peer-review process to fill gaps in ongoing research, complementing initiatives sponsored by other agencies, such as the National Institutes of Health (NIH).
NATIONAL INSTITUTES OF HEALTH
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency — making important discoveries that improve health and save lives.
NIH institutes that conduct NF research
National Cancer Institute (NCI), National Institutes of Neurological Disorders and Stroke (NINDS), National Institute of Child Health and Human Development (NICHD), National Eye Institute (NEI), National Institute on Deafness and other Communication Disorders (NIDCD), National Human Genome Research Institute (NHGRI), National Center for Research Resources (NCRR), National Heart, Lung, and Blood Institute (NHLBI), National Institute of Mental Health (NIMH), National Institute on Aging (NIA), National Institute of General Medical Sciences (NIGM), National Center for Advancing Translational Sciences (NCATS), and the Office of the Director (OD)
Become an NF Advocate
It is with your stories and voices united that we can make an impact on the future of NF research. Please join the NF Network advocates and use your voice to speak out, speak with, and speak for the NF community around the world. As the national leaders in the promotion of government-funded NF research, we need YOUR voice to bring the NF message to Congress each year to secure federal funds for NF research. As an advocate, you will:
Generate action from our elected officials by making calls and writing letters
Stay on top of policy and legislative issues through alerts and updates
Help elevate the need for NF research funding
Join us to increase NF research dollars
Interested in having your voice heard on the Hill? Create your own personal story! See below for samples of letters we have received for reference on how to write your own personal story. The NF Network will identify your representatives by your address, so please be sure to include your address and contact information at the bottom of your letter. To submit your story, please email us here.
Interested in having your voice heard on the Hill? Create your own personal story! The NF Network will identify your representatives by your address, so please be sure to include your address and contact information at the bottom of your letter. To submit your story, please email us here.
To establish a meeting with your representative in your local district use the following links, for the House and Senate. After finding the representatives names, call the local office and ask to speak with the person who handles state scheduling and request a time to meet with the member of Congress when they are in the district. If they will not be in the office when you would like to meet, request to meet with a health or defense aide in that office. The ideal time for meeting is in the Month of February or March. Please call us and we will be happy to assist you, 630-510-1115. Or email admin@nfnetwork.org.
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. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants.
During Hill Visit Days, the NF Network Advocacy Program storms the halls of Congress with strong NF advocates and educated 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 25+ years, and have been instrumental in generating over $400 million dedicated to NF research.
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