RESOURCES

PARENT RESOURCES

As a parent of a young child with NF we understand you face unique challenges. It can be difficult to understand what the future may hold, when and how are the appropriate times to communicate with your child about their disease, and much more.  We have designed this area to focus on the younger children with NF by providing NF adolescent stories, NF Kid programs, and resources.

 

NF FAMILY CAMP

This is a great way to meet others with NF and fun for the WHOLE family. More details »

ADDITIONAL RESOURCES

A new, detailed clinical practice guideline has been made available on the care of adults with neurofibromatosis type 1. This was written to help physicians treat their patients with NF1 and is a great resource to share with your doctor. It was published by the The American College Medical Genetics and Genomics (ACMG) and written collaboratively by several NF experts.

We’d like to thank ACMG and the NF experts (Douglas R. Stewart, MD, Bruce R. Korf, MD, Ph.D, Katherine L. Nathanson, MD, David A. Stevenson, MD and Kaleb Yohay, MD) for their work in this.

 

The article is available below:

CLICK TO GET THE ARTICLE “CARE GUIDELINES FOR ADULTS WITH NF1”

 

NF Registry
www.nfregistry.org

 

Other NF Organizations and NF Support
Being Positioned
Children's Tumor Foundation
Littlest Tumor Foundation
NF Network
NF2Crew Web site
NF 2 BioSolutions
Seventeen22 Foundation

 

NF Clinics
TX Children's Hospital/ Baylor College of Medicine NF Clinic, Houston
Children's Health of Dallas NF Clinic
Cook Children's Medical Center, Ft. Worth
M.D. Anderson Cancer Center, Houston
Neurofibromatosis Clinics Association, Inc.
UT Southwestern Medical Center, Dallas

 

Medical Resources
House Ear Institute
Worldcare
The Virtual Hospital
Texas Scottish Rite Hospital for Children

 

Helpful Resources
JUST ASK Reggie Bibbs!
Learning Disabilities Online Resource
American Pain Foundation
Acoustic Neuroma Foundation
About Face USA
Healthopedia
Texas Parent to Parent
Partners Resource Network TEAM Project
Heart of Texas Therapy Dogs
Texas Law Help

Government Programs & Support
The U.S. Army NF Research Program
Medicare
National Institute of Neurological Disorders and Stroke
Social Security Disability Help

Clinical Trials
National Institutes of Health Clinical Trials

NF Chat Rooms
Inspire NF

NF School Resources
School Guide for Students with NF
Parent's Guide to Special Education
Parent Guide to Section 504
School Guide for Students with Brain Tumors
Special Education Laws: Parent's Guide

Autism Awareness Resources
Students with Autism
Guide to Helping Kids with Autism Sleep Better
Autism Resource Center
Creating an Autism Friendly Home
Autism Support Network Resources
Moving with Kids with Autism
30 Ways to Celebrate Autism Awareness Month
Traveling with Kids with Autism

EMAIL US

For any questions or inquiries please call 972-739-6086  or fill out the following form:

OUR MISSION: The Texas NF Foundation is committed to meeting the needs of people impacted by neurofibromatosis by providing comfort, support, education, advocacy and funding of research for a treatment, prevention or cure.

STAY CONNECTED

CONTACT US

320 Decker Drive, Suite 100

Irving, TX 75062

Office: 972-739-6086 or 877-515-TXNF

Fax: 972-739-6087

EIN: 74-2138345

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© 2020 by The Texas Neurofibromatosis Foundation. All Rights Reserved.

This project was supported by

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