Living with NF

Recently Diagnosed
Information and resources for individuals and families newly diagnosed with NF1, NF2, or schwannomatosis.

Learn About NF
Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves anywhere on or in the body. In addition, it can affect the development of non-nervous tissues such as bones and skin.

Find Support: Find a Local Chapter or Affiliate
The Foundation has a presence in nearly all 50 states and facilitates patient support groups, medical symposia, and fund raising events. Learn more about the Chapter or Affiliate in your area.

Find a Doctor
A list of NF specialists in the United States and abroad.

Participate In Research
The number of open clinical trials for neurofibromatosis is growing! For the most current neurofibromatosis clinical trials please visit and enter search term 'neurofibromatosis'.

NF Registry
The Children's Tumor Foundation launched an NF Patient Registry in 2012. The purpose of this registry is to find people who may be eligible for clinical trials or other research studies being conducted in the field of neurofibromatosis, and to determine the commonality of specific NF characteristics. Please go to for more information and to get involved.

Patient Information
In this section we offer patient information in various formats.

NF Forum: Patient and Family Medical Symposium
The Children's Tumor Foundation hosts the annual NF Forum: Patient and Family Medical Symposium in cities across the country. This is a wonderful opportunity to learn more about NF research and treatment options as well as build relationships with individuals and families affected by NF.

NF Camp
Discover how young adults (ages 12-21) can connect with peers who understand what it’s like to live with NF.

Do you have NF, have a sister or brother with NF, or a friend/relative with NF? Are you between the ages of 10 and 17? Do you want to become involved in the Children's Tumor Foundation? If the answer to the above questions is "yes" then YouthCONNECT is just the place for you!

Discussion Boards
These forums bring together people from around the world. While they share a connection to NF, people hold many different opinions about religion, politics, music… virtually everything. This is a good thing, and makes for interesting conversations and sharing of views. Please click here and join the community sharing advice and support.

NF Chat Room
Click here to visit our Chat room to connect with others with NF.

Contact Us

Children's Tumor Foundation
120 Wall Street, 16th Floor
New York, NY 10005-3904

Phone: 212-344-6633