Neurofibromatosis Type 1 Resources

Support and Education Groups


In this webinar CHOP experts discuss neuropsychological evaluation, the legal rights of students, and how to support your child as he returns to learning.


The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.

Changing Faces provides support and promotes respect for everyone with a visible difference. Helpful resources include advice for meeting new people when you have a visible difference.

It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.

FACES: The National Craniofacial Association assists children and adults who have craniofacial disorders resulting from disease, accident or birth.

Find detailed information about Neurofibromatosis 1 in this article written by JM Friedman, MD, PhD, from the University of British Columbia in Vancouver, Canada.

GeneReviews are expert-authored, peer-reviewed disease descriptions focused on the diagnosis, management and genetic counseling for people with inherited conditions.

Provides information about neurofibromatosis type 1 and the genes involved. The website offers educational resources, patient support materials and links to clinical trials.

The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.

Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and the development of local NF organizations.

GINA is a federal law designed to protect people in the United States from genetic discrimination in health insurance and employment.

Find information to help you understand Neurofibromatosis 1, how it's identified, what causes it, how it's managed, and what you need to know about supporting a child with NF 1.