42 Years of Care and Ensuring No One Fights Alone!

NF Type 1

Neurofibromatosis Type 1 is caused by a mutation in a gene on chromosome 17. It affects approximately one in 3,000 people.

The best defense for NF Type 1 is knowledge. Be sure to use the search bar below to quickly search through our collected material.


NF Type 1

Adults with NF1

Overall Care

¿Qué son las manchas de color café con leche? 

Children's Tumor Foundation | 2023

Cafe Au Lait Spots and Diagnosis of NF1

www.amanf.org.br | 2017
By Dr. Luiz Rodrigues (translated by Dr. Mata-Machado

Tags: Cafe-au-lait, cafe aulait, birth marks

Diagnostic Criteria For Neurofibromatosis Type 1 (2021)

Children's Tumor Foundation | 2021

La NF Segmentaria

Children's Tumor Foundation | 2020

be iNFormed Series

NF1 Glossary of Terms

By NF Midwest

Segmental NF

Children's Tumor Foundation | 2020

What Are Café-Au-Lait Spots?

Children's Tumor Foundation | 2023

NF Type 1 and Cancer Risk and Screening

National Cancer Institute | 2021
By Sharon Reynolds

2021 NF1 Diagnostic Criteria Update and Comparison of Changes

NF Midwest Posts | 2021
By NF Midwest

Diagnostic Criteria for NF1 Infographic

Children's Tumor Foundation | 2021
By Children's Tumor Foundation

Revised diagnostic criteria for neurofibromatosis type 1 and Legius syndrome: an international consensus recommendation

Genetics in Medicine | 2021
By Eric Legius, Ludwine Messiaen, Scott R. Plotkin

Possible Complications of NF1 Shown on BodySheet

NF Midwest

be iNFormed Series

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…

be iNFormed Series

Medical Imaging for NF1: Radiation Exposure

By Allison Goetsch, MS, CGC

be iNFormed Series

Neurofibromatosis Type 1 and Aging (webinar)

NF Network

Webinar Recording The Neurofibromatosis Network presented this webinar on aging in neurofibromatosis type…

Primary Care for Patients with Neurofibromatosis Type 1

Nurse Practitioner | 2005
By Leigh Hart, RN, CCRN, PhD

Clinical Manifestations and Management of Neurofibomatosis Type 1

Elsevier | 2006
By James Tonsgard, MD

Neurofibromatosis Type 1 Revisited

Pediatrics, Official Journal of the American Academy of Pediatrics | 2009

be iNFormed Series

Information for Medical Professionals

NF Midwest

It can be difficult for general care physicians and even specialists to stay…

be iNFormed Series

Volumetric Measurement in Neurofibromatosis

NF Midwest | 2015
By Diana Haberkamp, reviewed by Eva Dombi, MD

Tumors

NF1 Brain Tumors

NF iNFo Fair Recording | 2021
By Dr. Virginia Harrod

Tags: optic pathway, gliomas, brainstem, intraspinal

Cutaneous Neurofibromas (Skin Tumors)

NF iNFo Fair Recording | 2021
By Dr. Lu Le

Tags: fibromas, treatment, excision, laser, electrodessication

Malignant Peripheral Nerve Sheath Tumors (MPNSTs)

NF iNFo Fair Recording | 2021
By Dr. AeRang Kim

Tags: treatments, trials, sarcoma, cancer

Plexiform Neurofibromas

NF iNFo Fair Recording | 2021
By Dr. Amy Armstrong

Tags: tumors, NF1, treatments, trials

Neurofibromas and Other Tumors

NF iNFo Fair Recording | 2021
By Dr. Steven Rhodes

Tags: NF1, plexiform

Robust surgical approach for cutaneous neurofibroma in neurofibromatosis type 1

JCI Insight | 2019
By Bahir H. Chamseddin, La’Nette Hernandez, Dezehree Solorzano, Juan Vega,1 and Lu Q. Le

Tags: tumors, skin, fibromas

Management of Cutaneous Neurofibroma: Current Therapy and Future Directions

Neuro-Oncology Advances | 2019
By Bahir H. Chamseddin and Lu Q. Le

Tags: tumors, skin

Plexiform Tumors in NF Type 1

Children's Tumor Foundation | 2020
By Heather Radtke, MS, CGC, Children’s Tumor Foundation, Medical College of Wisconsin Tena Rosser, MD, Children’s Hospital of Los Angeles Nicole Ullrich, MD, PhD, Boston Children’s Hospital; Dana Farber Cancer Institute

be iNFormed Series

Brainstem Tumors in NF1

NF Midwest | 2018
By Robert Listernick, MD

Tumor Suppressor Research

CDMRP

A video released in January 2013 by the Congressionally Directed Medical Research Program…

be iNFormed Series

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…

be iNFormed Series

Insurance Coverage of Fibroma Removal

NF Midwest

If you have cutaneous neurofibromas that are causing you any distress you CAN…

be iNFormed Series

Gastrointestinal Tumors (GISTs) in NF1

NF Midwest | 2020
By James Tonsgard, MD

Spinal Neurofibromas in NF1

NF Clinic at Amita Health/St. Alexis. | 2017
By Dr. Luiz Rodrigues, translated by Dr. Mata-Machado

The following is a blog by Dr. Luiz Rodrigues . Originally posted in…

be iNFormed Series

Neurofibromas (What They are and Types of)

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

Tags: Tumors

Optic Gliomas (webinar)

Pediatrics, Official Journal of the American Academy of Pediatrics | 2009

The Neurofibromatosis Network presented this webinar on optic gliomas in neurofibromatosis type 1…

be iNFormed Series

Optic Gliomas

NF Midwest | 2020
By Robert Listernick, MD

be iNFormed Series

Malignant Peripheral Nerve Sheath Tumors (MPNSTs) in NF1

NF Midwest | 2020
By Andrea Gross, MD

Children

Café au Lait: A Story of NF1 and My Special Spots

Children's Tumor Foundation By Jessica M. Boehman

Guía para los Profesionales de la Enseñanza

Children's Tumor Foundation | 2023

Learning with NF1

Children's Tumor Foundation | 2023

be iNFormed Series

2019 Health Supervision for Children With Neurofibromatosis Type 1

American Academy of Pediatrics | 2019

Guía sobre la NF para padres

Children's Tumor Foundation | 2021

Other Medical Issues in Children with NF1

NF iNFo Fair Recording | 2021
By Dr. Donald Basel

Tags: fibromas, nevus anemicus, juvenile xanthogranuloma, pruitis, itchiness, choroidal freckling, retinal, bones

Uncommon but Important Health Considerations in Children with NF1

Slides from 2021 NF iNFo Fair | 2021
By Donald Basel, MD

Tags:  Complications,

NF Collective Webinar: Transitioning to Adult NF Care

The NF Collective | 2020

Includes conversations with young adults who have NF

Transitioning to Adult Care: Guide for NF Patients and Caregivers

The NF Collective | 2021
By Members of the NF Collective

Recognizing Problems That Require Further Evaluation in Children with NF1

University of Alabama at Birmingham | 2017
By Dr. Bruce Korf

be iNFormed Series

Transitioning to Adult Care

NF Midwest Symposium | 2014
By Dr. Parag Shah, Lurie Children’s Hospital

At our annual symposium on October 25, 2014 Dr. Parag Shah of Lurie Children's…

Anti-Bullying Webinar

NF Network | 2013

In March 2013 NF Network hosted a webinar presented by Susan Fitzsimonds, the…

National Bullying Prevention Center

PACER's

2008 Health Supervision for Children With Neurofibromatosis Type 1

American Academy of Pediatrics | 2008
By Joseph H. Hersh, MD, and the Committee on Genetics

Social Emotional Development in Children with NF (webinar)

Children’s National Medical Center & Camp New Friends from the NF Network | 2014
By Sandy Cushner-Weinstein, PT, LCSW-C

The Neurofibromatosis Network presented this webinar on social emotional development in neurofibromatosis in…

How Parents Can Help Their Child Cope with a Chronic Illness

Center for Effective Parenting

Helping your Child Cope with Neurofibromatosis

NF Midwest | 1998
By Helen Hand, PhD

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

Help for Learning Issues in NF1

Supporting Learning and Attention in Children with NF1

NF iNFo Fair Recording | 2021
By Bonnie Klein-Tasman, PhD

Tags: ADHD, LD

Children’s Attention Study Using EEG Ages 7 to 11 with ADHD (without NF1)

University of Wisconsin-Milwaukee | 2021
By Bonnie Klein-Tasman, PhD

be iNFormed Series

Autism Spectrum Disorder Symptomatology in Children with NF-1

NF Midwest By Bonnie Klein-Tasman, Ph.D., & Christy Casnar, Ph.D.

Executive Functioning and NF1

NF Midwest Symposium | 2015
By Tiffany Dell’Aquila, PSY.D

be iNFormed Series

Comprehensive Neuropsychological Evaluations for Children with NF1

St. Louis Children’s Hospital | 2012
By Jill Isenberg, Ph.D., ABPP

101 Noteworthy Sites on Asperger’s and the Autism Spectrum

PhDinSpecialEducation.com

Handwriting Without Tears

Our easy-to-teach, easy-to-learn curriculum makes handwriting mastery joyful for students and their teacher.

Lumosity

Brain training exercises.

LD Online

The educators’ guide to learning disabilities and ADHD.

National Center for Learning Disabilities

Neuropsychological Functioning in Neurofibromatosis (webinar)

NF Mid-Atlantic

Recorded in December of 2012 by NF Mid-Atlantic, this webinar focuses on the different…

Early Signs of Learning and Attention Vulnerability in NF1 (webinar)

NF Mid-Atlantic

In April 2013 NF Mid-Atlantic hosted a webinar about the early signs of learning…

NF and School Issues (webinar)

NF Network

In March 2012 NF Network, presented a webinar about school issues in neurofibromatosis…

be iNFormed Series

Neurofibromatosis Type 1 Information for Teachers

NF Midwest

Use the NF1 Information for Teachers (NF Midwest be iNFormed Series) article to provide to…

A Neuropsychological Perspective on Attention Problems in Neurofibromatosis Type 1

Journal of Attention Disorders | 2012
By Alexandra K. Templer, Jeffrey B. Titus and David H. Gutmann

be iNFormed Series

Learning in Neurofibromatosis Type 1

NF Midwest | 2012
By Drs. Scott Hunter and James Tonsgard, University of Chicago

Summary of the Parent’s Guide to Learning Disabilities Associated with NF1

BC Neurofibromatosis Foundation By Summarized by Genefo

Nine page summary of a guide

Psychosocial

Women Issues and Family Planning

Orthopedic

Seizures/Epilepsy

Pain

Communication/Speech

Genetics

Get the Latest NF News & Updates

Sign up for our blog and always be up-to-date with Neurofibromatosis


Visit Us
Follow Me
Tweet
Share