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Neurofibromatosis (NF) Network


Community, NFP and Service Organizations

About Us

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 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

Providing seed grants for NF researchers

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

Rep/Contact Info

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View Personal Bio
Debbie Rinella
Events and Marketing Coordinator

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