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Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

Educational Materials

 

Understanding Neurofibromatosis 3rd Edition

James H. Tonsgard, MD

 

NF Network Brochure

NF Network

 

Clinical Care Options

NF Network

 

Understanding Your Child's Diagnosis of NF

Washington University Physicians

 

NF Buddies

A child's perspective of Neurofibromatosis

 

NF1 Body Sheet

NF Network

 

Clinical Manifestations Of NF1

James H. Tonsgard, MD

 

NF1 Neurosurgery Webinar PPT

John Hopkins

 

Learning Problems In NF1

Scott Hunter, PhD, Jim Tonsgard, MD

 

Insurance Coverage for Neurofibroma Removal

NF Midwest

 

Optic Pathway Gliomas

Robert Listernick, MD Children's Hospital of Chicago

 

Vascular Disease in NF1

Cynthia Hingtgen, MD, PhD

 

Reproductive Options for People with NF

Amanda Bergner, MS CGC, John Hopkins University

 

Neuropsychological Evaluations for Children with NF1

Jill Isenberg, PhD., ABPP; St. Louis Children's Hospital

 

Pain in Neurofibromatosis Type 1

Staci Martin Peron, PhD and Andrea Baldwin, CRNP

 

NF Helpful Resources

NF Network

 

NINDS

National Institute of Neurological Disorders & Stroke

 

Primary Care For NF1

Leigh Hart, RN, CCRN, PhD

 

UAB Genetic Testing Brochure 

Medical Genomics Laboratory

 

UAB Genomics Lab Website

UAB School of Medicine

 

Information for Teachers

NF Midwest

 

Bequest Brochure

 

Request an NF2 information packet by mail

Understanding Neurofibromatosis Type 2 

John & Linda Manth

Scott Plotkin, MD, PhD

Hearing Improvement after Bevacizumab in Patients with NF2

Scott R. Plotkin, M.D., Ph.D., Anat O. Stemmer-Rachamimov, M.D., Fred G. Barker II, M.D., Chris Halpin, Ph.D., Timothy P. Padera, Ph.D., Alex Tyrrell, Ph.D., A. Gregory Sorensen, M.D., Rakesh K. Jain, Ph.D., and Emmanuelle di Tomaso, Ph.D.

Hearing Restoration in Neurofibromatosis Type II Patients

Jeon Mi Lee , Jin Woo Chang , Jae Young Choi , Won Seok Chang , and In Seok Moon

Cochlear Implants In NF2

Derald E. Brackmann, M.D. House Ear Institute Los Angeles

HOP NF2 Information Sources

These websites and organizations are offered for the purpose of providing patients, families, and friends with information and resources that may be helpful in understanding NF2.

Reproductive Options for People with NF

Amanda Bernger, MS CGC, Johns Hopkins University

Insurance Coverage

Provided by NF Midwest

NF Helpful Resources

NF Network Brochure

NF2 Body Sheet

NF2 Children

Mia MacCollin & Victor-Felix Mautner

NF2 DNA testing

NF2 Glossary

NF2 Crew Brochure

Bequest Brochure

NINDS

National Institute of Neurological Disorders & Stroke

UAB Genetic Testing Brochure

UAB Genomics Lab Website

Understanding Neurofibromatosis

Comer Children's Hospital-University of Chicago

Psychological distress in people with disfigurement from facial palsy

School of Medicine, University of Manchester, UK

 

Your Child's Diagnosis of Neurofibromatosis

St. Louis Children's Hospital

Addressing Academic Concerns: A Guide for Parents of Children With Neurofibromatosis (NF)1

Washington University in St. Louis/Children's Hospital St. Louis

Addressing Executive Function: A Guide For Parents of Children With Neurofibromatosis 1

Washington University in St. Louis/Children's Hospital St. Louis

Living with Neurofibromatosis 1: A Guide for Adults

Washington University in St. Louis/Children's Hospital St. Louis

Telling People You Have Neurofibromatosis 1

Washington University in St. Louis/Children's Hospital St. Louis

Talking About Neurofibromatosis: A Guide for Teens

Washington University in St. Louis/Children's Hospital St. Louis

Transitioning to Adulthood: A Guide for Individuals with NF1

Washington University in St. Louis/Children's Hospital St. Louis

iPad Apps for the Classroom

Nicole Weckherlin, OTR/L St. Louis Children's Hospital

Functional Apps

Nicole Weckherlin, OTR/L St. Louis Children's Hospital

iPad Basics

Jot Not and Annotate Apps

Tech Finder: Expert-approved apps & games for your child