Ending neurofibromatosis through research. Patient Engagement program, meaning the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community. A NF Clinic Network by state. Provides a registry for all types of NF (including NF1, NF2, and schwannomatosis).

NF Camp is the annual summer camp of the Children's Tumor Foundation, dedicated to teens and young adults living with neurofibromatosis (NF). For over 20 years we have hosted this week-long experience for teens and young adults ages 12 to 25. NF Camp takes place on the third or fourth week of July (6 nights/6 days) in Salt Lake City, Utah. Application on CTF website.

Teens and young adults ages 12 to 25 living with neurofibromatosis

Provides a camp is for children and teens with Neurofibromatosis (NF), a genetic disorder that causes tumors to grow along various types of nerves. Campers come from all over the United States, Canada, and the world. During these weeks, they are able to interact with others who have the same condition, and learn more about themselves and others while enjoying everything that Camp K has to offer.

NF Camp takes place on the third or fourth week of July (6 nights/6 days) at Camp Kostopulos in Utah. Details and application on Children's Tumor Foundation website.
Contact: Julie Pantoliano