Many people have probably never heard of this disorder, but it's not as rare as you may think.
Women and Children's Hospital of Buffalo treats many patients with NF every year. The disorder causes tumors to grow on the nerves.
19-year old Lukas Napier of Lewiston was diagnosed at age 3 with neurofibromatosis. He is in pain every day and medication doesn't help very much.
That's why his family has been pushing for more awareness. They are hoping it will help them raise crucial dollars for research that will one day find not only better treatments, but a cure.
Watch their story to find out how you can help. Here's Eyewitness News Anchor Joanna Pasceri.