Neurofibromatosis Type 2 Resources

Support and Education Groups


Videos

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


Websites

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.

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 2 in this article written by D Gareth Evans, MD, FRCP, director of the Neurofibromatosis Clinic at St. Mary's Hospital, Manchester, United Kingdom.

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 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.

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