Resources

Helpful resources as your family navigates the neurofibromatosis diagnosis. 

The goal of the KOSELUGO Patient Savings Program is to assist eligible patients with their out-of-pocket costs for KOSELUGO.

Most eligible patients will pay $0 per month and may have access to up to $26,000 per year to assist with KOSELUGO out-of-pocket costs. There are no income requirements to participate in the program

Social Security Administration*

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*Check with your state agency with any questions.  This is for informational purposes only. 

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Apple Counseling & Consulting

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Dani Larsen, NF Mom and 

Licensed Professional Counselor

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"In 2017, my youngest child was diagnosed with NF1.  This has opened the door for me in finding holistic approaches to assist individuals and families in improving their quality of life.  It is important for these clients to have a strong support network.  I’m passionate about speaking with others about neurofibromatosis, and helping those who are in need of someone understanding their perspective." -Dani Larsen

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Texas Neurofibromatosis

Foundation

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The Texas Neurofibromatosis

Foundation®  a nonprofit organization,

was formed in 1980 to battle neurofibromatosis and to serve the increasing number of men, women and children in Texas suffering with this disorder. Their mission is to meet the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy and funding of research for a treatment, prevention or cure.

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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 Littlest Tumor Foundation's mission is to increase understanding of neurofibromatosis (NF), empower affected families, and advance research of preventative therapies.

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B the Difference provides 

all-inclusive hosted trips for selected

NF recipients and their families. 

We Need Your Support Today!