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
NF Collective
NF2Crew Web site
NF 2 BioSolutions
Seventeen22 Foundation