Articles about various complications of NF.
Our be iNFormed articles are about the various complications of NF and are written for normal (ie. not brainiacs). They are meant to provide basic information and are not meant to substitute for medical care. We are frequently adding articles. Please, let us know if you are looking for something in particular.
NF1 Information for Medical Professionals
Take this to your doctors!
Neurofibromas (What They are and Types of)
by James Tonsgard, MD
Optic Pathway Tumors in Neurofibromatosis Type 1
by Robert Listernick, MD
Seizures in NF1
by Nikolas Mata-Machado. MD
NF1 Gene Deletion
by Heather Radtke, MS, CGC
Vascular Disease in Neurofibromatosis Type 1
by Cynthia Hingtgen, MD, PhD
Pain in Neurofibromatosis 1
by Staci Martin Peron, PhD and Andrea Baldwin, CRNP
Insurance Coverage for Neurofibroma Removal
by NF Midwest
NF1 Information for Teachers
by NF Midwest w/BC NF Foundation
Learning Problems in Neurofibromatosis-1
by Scott Hunter, PhD and James Tonsgard, MD
Comprehensive Neuropsychological Evaluations for Children with NF1
by Jill Isenberg, Ph.D.
Reproductive Options for People with NF1, NF2 and Schwannomatosis
by Amanda Bergner, MS CGC
Volumetric Measurement in Neurofibromatosis
by Diana Haberkamp, reviewed by Eva Dombi, MD
What is Schwannomatosis
by NF Midwest
Applying for Disability Benefits with Neurofibromatosis
by Ram Meyyappan
Communication Skills of Individuals with NF1
by Heather Thompson, PhD CCC-SLP;
NF Midwest is a wonderful resource for us right here. They raise funds for local research clinics. They provide excellent NF informational packets and web based educational programs so people with NF in their lives can learn about the newest medical information and research discoveries about NF. They organize many fun events throughout our area for adults, children, and families to enjoy, to meet others, to share their story, and find support through friendships made. NF Midwest, as a smaller more local foundation, can provide support in a more personal way that is also very important to our well-being and hope.
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The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.
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