Neurofibromatosis Type 1 Resources
Support and Education Groups
Neurofibromatosis Family Association (NFFA)
NFFA is a parent volunteer group that exists to support families and individuals at CHOP who are affected by neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) or schwannomatosis.
Thriving in School After Treatment
In this webinar CHOP experts discuss neuropsychological evaluation, the legal rights of students, and how to support your child as he returns to learning.
American Cancer Society
The American Cancer Society website offers helpful information about childhood cancer diagnosis, treatment, prognosis and resources.
Changing Faces us a charity that helps improve the lives of people with craniofacial abnormalities and transform public attitudes toward people with an unusual appearance.
Children's Craniofacial Association (CCA)
The Children's Craniofacial Association empowers and gives hope to individuals and families affected by facial differences.
Children's Tumor Foundation: Ending NF Through Research
The Children's Tumor Foundation is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis.
Coalition for Genetic Fairness
It addresses the growing concern surrounding the misuse of genetic information in health insurance and employment decisions.
FACES: The National Craniofacial Association
FACES: The National Craniofacial Association assists children and adults who have craniofacial disorders resulting from disease, accident or birth.
Gene Reviews - Neurofibromatosis 1
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.
National Library of Medicine Genetics Home Reference - NF1
Provides information about neurofibromatosis type 1 and the genes involved. The website offers educational resources, patient support materials and links to clinical trials.
National Organization for Rare Disorders (NORD)
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.
The Genetic Information Nondiscrimination Act (GINA)
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.