nf-logo
nf-logo

What is the NF Network Advocacy Program

NF Network Advocacy Program

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. 

For the past 20 years, During Hill Visit days, the NF Network Advocacy Program stomped 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 20 years, and have been instrumental in generating over $600 million dedicated to NF research. 

Since 1996, NF research has been funded through two vehicles:

          1) Congressionally Directed Medical Research Programs (CDMRP)

          Funded research led to the creation of the NF Clinical Trials Consortium a group of 21 clinical sites worldwide with an operational center to analyze data. 

          2) National Institutes of Health (NIH) 

NF advocates, urge his/her 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 support of the NF Advocates that the funding programs become possible.   

By signing up to receive the NF Advocacy Action alerts you can play a vital role in securing federal funding for NF research.  Are you interested in joining the Hill Visit Days or scheduling a meeting with your congressman in your district?  Give us a call and we will assist you, 630-510-1115

Participating Organizations of the NF Network Advocacy Program

Leadership Council   

Participating Organizations

 

NF ADVOCATES PHOTO GALLERY
Advocacy 2017

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).

 

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).
cdmrp summary

 

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

We need your voice Join the NF Network advocates. 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 Create your own personal story! See below for samples of letters we have received for reference on how to write your own personal story.

 

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.  For more information watch the webinar below on how to structure your local meeting.  Please call us here at the office and we will be happy to assist you, 630-510-1115.

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 for the past 20 years the NF Network Advocacy Program stomped 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 the past 20 years, and have been instrumental in generating over $600 million dedicated to NF research.


Sign up to Stay iNFormed Submit Your NF Story
 

Watch the video below: Talk to your Congressmen about NF research

NF Advocacy Toolkit

NF Needs your Local Voice
Card image cap

NF Advocacy Fact Sheet

View/Download
Card image cap

Meeting Presentation

View/Download
Card image cap

Military Benefit

View/Download
Card image cap

FAQ's for Advocacy

View/Download
Card image cap

NF Clinical Trials Consortium

View/Download