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 about NF and the importance of continued research funding. The program is advised by a Leadership Council and attended by NF patient organizations and individual participants from across the country.
For the past 20 years, a diverse and impassioned group of volunteers for the NF Network Advocacy Program have flooded the halls of the U.S. House and Senate buildings to educate our congressional leaders about the importance of federal NF research funding. Advocates participating in this program are the proud, loud voice of the NF community on Capitol Hill and have been instrumental in generating over $340 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 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 treatments and a cure for NF and related disorders. It is because of the hard work– and with the support of–NF advocates that funding these programs has 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 congressperson in your district? Call NF Network and we will assist you: 630-510-1115.
Participating Organizations of the NF Network Advocacy Program
- Webinars for those impacted by NF
- Understanding Neurofibromatosis (ebook)
- Understanding Neurofibromatosis Type 2 (ebook)
In Their Own Words