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Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

Neurofibromatosis Network Mission

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Our Mission:

“Is to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, providing outreach through education and awareness, while offering hope and support to those affected by NF. "

The NF Network (formerly NF, Inc.) is a non-profit 501(c)(3) organization and was founded in 1988 by a group of people who were in some way affected by neurofibromatosis. We are the leading national organization advocating for federal funding for NF research and building and supporting NF communities. The NF Network’s goal is to eradicate the health issues, pain, isolation and uncertainty that the diagnosis of NF inflicts. The NF Network provides opportunities for local NF organizations to share experiences. The network is a dynamic and growing open space for shared resources, development of new tools, and creation of innovative programs. It brings together groups from around the country to speak as one voice on national issues.

The NF Network programs and services include:

  • Active pursuit of NF treatments and a cure

  • Highly successful advocacy program for Congressional funding of NF research through a grassroots initiative involving NF advocates in all 50 states

  • Working closely with members of the House and Senate to seek funding for NF research through the National Institutes of Health (NIH) and the Department of Defense Congressionally Directed Medical Research Program (CDMRP)

  • Providing seed grants for NF researchers

  • Opportunities for participation with NF researchers, clinical trials, clinicians at scientific meetings and medical conferences

  • Building and supporting NF communities

  • Coordination of state and regional efforts to maximize impact at the national level

  • Creating awareness of NF and its effects to health care professionals, government authorities and the general public

  • Patient outreach through physician referrals

  • Provide peer support through chats, walks, gatherings, blogs, etc.

  • Educational meetings and webinars

  • Publication and distribution of NF educational materials to individuals, physicians, educators, media, etc.

You can learn more about the NF Network by reading the downloadable PDF, "About the NF Network"