Neurofibromatosis Inc

aka Nf Network   |   Wheaton, IL   |  www.nfnetwork.org

Mission

The mission of the national NF Network 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.

Ruling year info

1990

President

Ms. Cheri Stewart

Vice President

Ms. Rosemary Anderson

Main address

213 S. Wheaton Ave.

Wheaton, IL 60187 USA

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EIN

04-3030760

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Other Medical Research N.E.C. (H99)

Nerve, Muscle and Bone Diseases (G50)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Creating a community of support for those affected by NF by developing local NF support groups. Providing educational meetings for individual families affected by NF. Providing educational opportunities for health care professionals. Provide physician referrals. Advocate for public and government awareness of NF. Support research to develop treatment and cure for NF.

Population(s) Served

NF, Inc. has a grassroots advocacy program to obtain federal dollars for Neurofibromatosis research.

Population(s) Served

NF Network provides opportunities to learn about Neurofibromatosis management and care through medical professionals with an interest in Neurofibromatosis.

Population(s) Served

NF, Inc provides referrals to medical professionals with an interest in Neurofibromatosis.

Population(s) Served

NF, Inc. provides educational materials to individuals diagnosed with Neurofibromatosis and health care professionals.

Population(s) Served

Where we work

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Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The NF Network plays a vital role on the national NF stage, bringing the voice of the community to researchers, funders, and clinicians, pushing ever closer to the cure.

Through awareness programs the NF Network seeks to Promote NF Research through participation in scientific, medical meetings and conferences. Increase advocacy efforts for NF research funding. Communicate the needs of the NF community and provide seed grants. While creating awareness we are facilitating NF Care through education and resources, increasing our Geographical outreach, providing clinical referrals and providing educational meetings and webinars.

The NF Network has a track record of securing through the NF Network Advocacy Program nearly $288 million for the Neurofibromatosis Research Program. These funds have been match almost dollar for dollar at the National Institutes of Health. The NF Network with it's local member organizations across the country are strategically working together to maintain the voice of the NF community through it's federal advocacy program and to provide educational and medical resources to individuals with NF.

It is been reported that 100,000 Americans are diagnosed with Neurofibromatosis. We have a need for additional awareness programs to be able to find the individuals and families in the United States.

Financials

Neurofibromatosis Inc
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Operations

The people, governance practices, and partners that make the organization tick.

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Neurofibromatosis Inc

Board of directors
as of 06/04/2016
SOURCE: Self-reported by organization
Board chair

Cheri Stewart

No Institutional Affiliation

Nicole Hicks

No Institutional Affiliation

Mike Montgomery

No Institutional Affiliation

Cheri Stewart

No Institutional Affiliation

Rosemary Anderson

No Institutional Affiliation