Neurofibromatosis Type 1 Resources

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.

https://www.cancer.org/cancer/cancer-in-children.html

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

https://www.changingfaces.org.uk/

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.

http://www.ccakids.com

The Children's Craniofacial Association empowers and gives hope to individuals and families affected by facial differences.

https://www.ctf.org/

The Children's Tumor Foundation is dedicated to improving the health and well-being of individuals and families affected by neurofibromatosis.

http://www.geneticfairness.org/

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

http://www.faces-cranio.org

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

http://www.ncbi.nlm.nih.gov/books/NBK1109/

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

http://www.ncbi.nlm.nih.gov/books/NBK1116/

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

http://ghr.nlm.nih.gov/condition/neurofibromatosis-type-1

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

http://www.rarediseases.org/

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

http://www.nfnetwork.org

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

http://ghr.nlm.nih.gov/spotlight=thegeneticinformationnondiscriminationactgina

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

https://medlineplus.gov/genetics/condition/neurofibromatosis-type-1/

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.