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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 Resources

Non-Scientific Articles

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Congenital Pseudarthrosis of the Tibia/Fibula in Neurofibromatosis Type 1 (NF1)

NF Midwest | 2021
By Nicole Sevison RN, Haluk Altiok MD

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Learning Problems in Neurofibromatosis-1

NF Midwest | 2012
By Scott Hunter, PhD and James Tonsgard, MD

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NF1 Information for Teachers

NF Midwest w/BC NF Foundation | 2012

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Vascular Disease in Neurofibromatosis Type 1

NF Midwest | 2012
By Cynthia Hingtgen, MD, PhD

What should you know? People with neurofibromatosis type 1 (NF1) can have many…

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Pain in Neurofibromatosis 1

NF Midwest | 2013
By Staci Martin Peron, PhD and Andrea Baldwin, CRNP

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NF1 Gene Deletion

NF Midwest | 2014
By Heather Radtke, MS, CGC

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Insurance Coverage for Neurofibroma Removal

NF Midwest | 2015

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What to do if your personal physician doesn’t know a lot about NF?

NF Midwest | 2017
By Jason Marker, MD

We recently invited Dr. Jason Marker, a primary care physician, to share his…

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NF1 and Velopharyngeal Insufficiency

Department of Communication Sciences and Disorders, California State University, Sacramento By Kimberly Marrs, B.S., & Heather Thompson, Ph.D., CCC-SLP

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Brainstem Tumors in NF1

NF Midwest | 2018
By Robert Listernick, MD

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Procedure Codes for Removing a High Quantity of Neurofibromas

NF Midwest | 2016
By Multiple Contributors

Leading the Fight for Options in Treating Dermal Neurofibromas: NF Midwest gets new procedure codes…

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Gastrointestinal Tumors (GISTs) in NF1

NF Midwest | 2020
By James Tonsgard, MD

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Neurofibromas (What They are and Types of)

NF Midwest | 2015
By James Tonsgard, MD, University of Chicago

Tags: Tumors

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Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1

NF Midwest | 2020
By Andrea Gross, MD

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Medical Imaging for NF1: Radiation Exposure

By Allison Goetsch, MS, CGC

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What is Schwannomatosis?

NF Midwest

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Reproductive Options for People with NF1, NF2 and Schwannomatosis

Johns Hopkins University | 2012
By Amanda Bergner, MS CGC

People who themselves have been diagnosed with NF1, NF2 and schwannomatosis, or who…

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