You Can Help  


 Resource Links


Arc Greater Twin Cities


(Patient Advocacy Coatlition for Educational Rights)

LDA of America

Disability Rights and Advocacy

PAF (Patient Advocacy Foundation)

PAF provides patients with arbitration, mediation and negotiation to settle issues with access to care, medical debt, and job retention related to their illness.

Camp New FriendsCamp New Friends (CNF) offers children and teens with Neurofibromatosis (ages 7-15), seven days and six nights of summer fun and social connections.
En Español
La neurofibromatosis tipo 1 
National Institute of Health 
Social Security Administration 
Social Security and Disability Resource CenterAn informational website that provides answers to questions about how to apply for disability, how to appeal a claim in the event of a denial, how to navigate the federal system, and how to avoid certain mistakes that are commonly made by applicants.
Medical Grant
United Healthcare Children's FoundationDedicated to facilitating access to medical-related services that are not fully covered by the available commercial health benefit plan
NF1 Photo Gallery
Positive ExposureFormer fashion photographer - turned - advocate works to Positive Exposure
NF2 CrewAn online discussion group for people with NF2. Comprehensive list of links related to NF2.
AdvocureNF2An advocacy group advancing research
NF Clinics in Minnesota
Children's Hospitals and Clinics of Minnesota 
Gillette Children's Specialty Healthcare 
Mayo Clinic 
University of Minnesota 
Online Support
Inspire-NF Inc.An online support community for NF1 and NF2
Children's Tumor FoundationOnline discussion group for NF1 and NF2
Pain Management
American Academy of Pain Management 
American Pain Foundation 
Something Special
Wishes & MoreEnhances the life of a child fighting a terminal or life-threatening condition by providing extraordinary experiences including wishes, scholarships, memorials and more.
Make-A-WishDedicated to granting the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy!
Travel Related
Angel Flight 
National Patient Travel Center 


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1430 Concordia Ave, #40241
        St. Paul, MN 55104
(651) 204-0067
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There are so many ways to help create more awareness, education and support for those affected by neurofibromatosis. You can make a difference!

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CONTACT: 1430 Concordia Avenue, #40241, Saint Paul, MN 55104 | (651) 204-0067   Send us an email