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Neurofibromatosis (NF) is a rare genetic disorder that affects people of all ages. For some, signs and symptoms are present at birth, while for others, the onset occurs later in childhood or later in life.
The disorder causes nerve tumors. While these nerve tumors are almost always benign (but can sometimes become cancerous), they are associated with a number of complications—skeletal deformities, learning disabilities, hearing loss, chronic pain. There are different types of NF, and the types of tumors, locations of tumors, and characteristic signs and symptoms vary between the different types.
Here are five resources for patients and parents of patients with NF.
Neurofibromatosis Network
Neurofibromatosis Network is a non-profit patient advocacy group founded by people whose lives have been affected by NF. A major part of their mission is advocating for and funding research that furthers the knowledge about NF and the treatment of NF. The website offers a number of useful tools for patients and parents, including a search tool for finding NF specialists and links to regional advocacy groups. There is also their NF Clinical Care Options packet, which provides a guideline for working with healthcare providers, a list of NF care clinics in the U.S., and information about clinical trials.
Children’s Tumor Foundation
The Children’s Tumor Foundation is dedicated to “ending NF through research.” CTF raises funding for research, provides avenues for collaboration between NF researchers, and offers a number of resources that are useful to patients. These resources include a library of guidebooks and videos, a directory of healthcare providers who specialize in the treatment of NF, and a current list of clinical trials for NF drug therapies. CTF is a great place to start for patients who want to get involved with research or become patient advocates. It is also a great resource for family members of patients who want to take part in awareness events.
Littlest Tumor Foundation
Littlest Tumor Foundation provides supportive programs to the NF community, offering families and children affected by NF to meet other people who have shared the experience. Visit the site to learn about their programs—the NF Family Wellness Retreat and the NF Young Adult Leadership Program.
Camp New Friends
Camp New Friends is an annual condition-specific summer camp for kids and teens with NF (ages 7 to 17). The week-long camp offers young people with NF the chance to meet, socialize, and participate in activities with others like them. The camp has a medical staff onsite 24 hours a day, headed by a child neurologist.
Neurofibromatosis Fact Sheet
Published by the National Institute of Neurological Disorders and Stroke (NINDS), this fact sheet contains answers to frequently asked questions about the different types of NF (NF1, NF2, schwannomatosis). It is an excellent starting point for new patients and parents of patients.
