Neurofibromatosis Program Resources
Support and Education Groups
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.
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.
The Children's Tumor Foundation is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis.
Find detailed information about Neurofibromatosis 1 in this article written by JM Friedman, MD, PhD, from the University of British Columbia in Vancouver, Canada.
Find detailed information about Neurofibromatosis 2 in this article written by D Gareth Evans, MD, FRCP, director of the Neurofibromatosis Clinic at St. Mary's Hospital, Manchester, United Kingdom.
Provides information about neurofibromatosis type 1 and the genes involved. The website offers educational resources, patient support materials and links to clinical trials.
Provides information about neurofibromatosis type 2 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.
The NF2 Crew is an online support community for patients and family members (and other loved ones) with neurofibromatosis type 2.
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.