Family Resources

Helpful resources as your family navigates the neurofibromatosis diagnosis. 

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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

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. 

B Kind provides relief to NF families in the form of food assistance and medical and educational needs. B Kind has provided food security, rent assistance, laptops and tablets for online schooling, hotel funds for out-of-state surgeries and appointments, school supplies and uniforms, co-pays for surgeries, specific medical equipment, and more. Only individuals with a Neurofibromatosis diagnosis (NF1, NF2, Schwannomatosis) living in the Contiguous United States are eligible for this program. 

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Social Security Administration*

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

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