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Be iNFormed Database

Simple articles about various complications of NF.

NF Midwest Database

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.

Be iNFormed PDFs - Simple non-scientific articles create by NF Midwest for the NF Community

NF1 Information for Medical Professionals
Take this to your doctors! Also, take the guidelines that are further below.

Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1
by Andrea Gross, MD March 2020

Gastrointestinal Tumors (GISTs) in NF1
by James Tonsgard, MD March 2020

Autism Spectrum Disorder Symptomatology in Children with NF1
By Bonnie Klein-Tasman, Ph.D., & Christy Casnar, Ph.D Feb 2018

Brainstem Tumors in NF1
by Robert Listernick, MD March 2018

Medical Imaging for NF1: Radiation Exposure
by Allison Goetsch, MS, CGC July 2017

Communication Skills of Individuals with NF1
by Heather Thompson, PhD CCC-SLP March 2017

What to do if your personal physician doesn’t know a lot about NF?
by Jason Marker, MD March 2017

Scoliosis in NF1
by Christopher Moertel, MD Nov. 2017

Neurofibromas (What They are and Types of)
by James Tonsgard, MD 2016

Procedure Codes for Removing a High Quantity of Neurofibromas
by NF Midwest April 2016

NF1 and Velopharyngeal Insufficiency
by Kimberly Marrs, B.S., & Heather Thompson, Ph.D., CCC-SLP,  Sept 2020

Seizures in NF1
by Nikolas Mata-Machado. MD April 2015

Insurance Coverage for Neurofibroma Removal
by NF Midwest Oct 2015

Volumetric Measurement in Neurofibromatosis
by Diana Haberkamp, reviewed by Eva Dombi,  MD  Feb 2015

NF1 Gene Deletion
by Heather Radtke, MS, CGC Dec 2014

Pain in Neurofibromatosis 1
by Staci Martin Peron, PhD and Andrea Baldwin, CRNP June 2013


Optic Pathway Tumors in Neurofibromatosis Type 1
by Robert Listernick, MD Revised Dec. 2020

Vascular Disease in Neurofibromatosis Type 1
by Cynthia Hingtgen, MD, PhD Nov 2012

NF1 Information for Teachers
by NF Midwest w/BC NF Foundation Sept 2012

Learning Problems in Neurofibromatosis-1
by Scott Hunter, PhD and James Tonsgard, MD 2012

Comprehensive Neuropsychological Evaluations for Children with NF1
by Jill Isenberg, Ph.D. 2012

Reproductive Options for People with NF1, NF2 and Schwannomatosis
by Amanda Bergner, MS CGC Sept 2012

What is Schwannomatosis
by NF Midwest

Other Important Material - see additional resources at nfmidwest/learn

Care Guidelines for Adults with NF Type 1
American College of Medical Genetics and Genomics 2018

2019 Health Supervision for Children With Neurofibromatosis Type 1
From the American Academy of Pediatrics (Apr 2019)

Applying for Disability Benefits with Neurofibromatosis
by Ram Meyyappan


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