Neurofibromatosis Program

Neurofibromatosis Resources

Neurofibromatosis Family Association (NFFA)

The Neurofibromatosis (NF) Family Association is a parent volunteer group that exists to support families and individuals at The Children’s Hospital of Philadelphia who are affected by  neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) or schwannomatosis. The goal of the Association is to help enhance and expand CHOP’s NF clinical services and research endeavors, and build an NF community through robust educational and fundraising activities.

For more information, email the NF Family Association. For support or to be connected with families that are experiencing similar challenges email NFSupport@gmail.com.

Clinical services for NF1

We recommend that children with a diagnosis of NF1, or those suspected of having NF1, call 215-590-2920 to reach the Neurofibromatosis Program at CHOP. Adults who have neurofibromatosis type 1 (NF1) or who would like more information about NF1 may contact the Medical Genetics team at the Hospital of the University of Pennsylvania at 215-662-4740. Appointments can be requested online or by calling 1-800-789-PENN (7366).

Support resources for NF1

The Children's Tumor Foundation
95 Pine Street, 16th Floor
New York, N.Y. 10005
Telephone: (212) 344-6633 or Toll Free at 1-800-323-7938
Fax: (212) 747-0004
info@ctf.org

Neurofibromatosis, Inc.
P.O.Box 66884
Chicago, IL 60666
Phone: 630-627-1115/ 1- 800-942-6825
Fax: 630-627-1117

American Cancer Society
1599 Clifton Road NE.
Atlanta, GA 30329
Phone: 1-800-227-2345

National Library of Medicine Genetics Home Reference- NF1
Gene Reviews- NF1
Understanding NF1

Support resources for NF2

Adults and children who have neurofibromatosis type 2 or who would like more information about neurofibromatosis type 2 may contact the Medical Genetics team at The Hospital of the University of Pennsylvania at 215-662-4740. Appointments can also be requested online or by calling 1-800-789-PENN (7366).

Neurofibromatosis Network
213 S. Wheaton Ave.
Wheaton, IL 60187
Phone: 630-510-1115
Fax: 630-510-8508

The Children's Tumor Foundation
95 Pine Street, 16th Floor
New York, N.Y. 10005
Telephone: (212) 344-6633 or Toll Free at 1-800-323-7938
Fax: (212) 747-0004
info@ctf.org

NF2 Crew
National Library of Medicine Genetics Home Reference - NF2
Gene Reviews - NF2

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