Disease, Disorders, Medical Disciplines

Neurofibromatosis Inc

Quick Facts

aka Nf Network

Wheaton, IL

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

1990

President

Ms. Cheri Stewart

Vice President

Ms. Rosemary Anderson

Main Address

213 S. Wheaton Ave.

Wheaton, IL 60187 USA

Keywords

Support, research, advocacy, public awareness

EIN

04-3030760

 Number

6114601161

Cause Area (NTEE Code)

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 + Results

What we aim to solve New!

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Our programs

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

SOURCE: Self-reported by organization

Advocacy for NF Research

Educational Meetings

Referrals

Educational materials

Where we workNew!

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Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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.

The NF Network programs are based on creating awareness and identifying individuals and families affected by Neurofibromatosis. The NF Network and it's member organizations have identified 14,000 families in the United States with NF. We will know we are making progress as we increase the number of identified NF individuals and families affected by 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.

External Reviews

Financials

Neurofibromatosis Inc

Fiscal year: Oct 01 - Sep 30

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Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2014
A Pro report is also available for this organization for $125.
Click here to view a Sample Report.

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2014
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable