Skip to main content

Announcing a new Children’s Tumor Foundation brochure, Diagnosed with NF1

By July 16, 2021February 28th, 2024NF1

The Children’s Tumor Foundation is pleased to share our newest patient brochure, Diagnosed with Neurofibromatosis Type 1 (NF1): A Guide for those living with NF. This booklet is designed to help patients and families facing a recent NF1 diagnosis, or living with a previous one, to find valuable information and support.

This resource was created by the Children’s Tumor Foundation, and is sponsored by AstraZeneca.

This guide will answer some of the most common questions that people living with NF1 and their caregivers have about coping with a diagnosis, understanding how NF1 occurs, recognizing symptoms, and managing care while living a full life.

Using NF1 patient photos and quotes throughout, this vibrant new booklet contains important new information about NF1, including the 2021 NF1 diagnostic criteria, the latest NF research, and the most recent NF1 care guidelines. Topics include: 



  • Introduction to NF1
  • NF1 diagnostic criteria 
  • Understanding the genetics of NF1
  • Clinical features of NF1
  • Learning challenges
  • Medical management of NF1
  • Where to find support and resources


Patients, families, caregivers, and NF professionals can read or download this resource HERE  or at the Children’s Tumor Foundation website at There you will also find a link to our new CTF brochure fulfillment site  where you can order free print copies of this and other CTF resources. Limited quantities will be sent to you at the address you specify at no charge. 

This patient brochure is currently available in English. Translations into additional languages are in progress and will be available soon. 

We are also pleased to announce that new publications for NF2 and schwannomatosis will be available in the near future when the updated NF2 and schwannomatosis diagnostic criteria are announced.