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Children's Tumor Foundation, including pamphlets

Children's Tumor Foundation includes research updates, latest news and upcoming events. 'Life is full of possibilities for a kid living with NF.' Please see their pamphlets for more information:

Neurofibromatosis, Inc.

Neurofibromatosis, Inc. is a website advocating for federal funding for NF research and the development of local NF organizations. It includes a description of the condition, help finding a doctor, and educational materials.'We are the national non-profit network serving families and individuals affected by Neurofibromatosis'. 


 Learn more about the genetics of NF1.

Understanding NF1
Understanding NF1 is a medical resource about Neurofibromatosis 1 for parents, patients, and providers. It includes sections on identifying, explaining, managing and supporting.
American Academy of Pediatrics (AAP) - Health Supervision Guidelines

The AAP endorses these Health Supervision Guidelines. Families may find these helpful when talking to their pediatricians or family physicians.

The Neuro Foundation

The Neuro Foundation has information sheets to help understand the condition, written for NF1 patients, their families, and teachers. They provide facts and practical help about the management of neurofibromatosis, as well as the latest research. 

Genetics Home Reference

Consumer-friendly information about human genetics from the U.S. National Library of Medicine

Genetics Home Reference for NF1

Add to our resources! Do you recommend any helpful groups, books, organizations that would be useful to other educators/parents? Please share the specific titles or addresses with us.