Providing Perspective
Hearing that your child has NF1 can be a very difficult experience. Often it comes as unexpected news about a child who appears to be perfectly healthy, save for the presence of some innocent-looking brown skin spots previously passed off as simple birthmarks. Suddenly, your child is labeled as having "neurofibromatosis," an unpronounceable word that many doctors have to look up in their textbooks to explain.

As you begin to learn about NF1, more questions are raised. You may have questions about the severity of the disorder, risks, impact on life span, and quality of life. It is natural to be curious about progress towards a cure, or medical and surgical treatments that can address symptoms of the disease. If you have some knowledge of NF1 already, you may wonder how this applies to your child.

The mission of this site is to answer these questions by placing NF1 into perspective. It is designed for the general public, especially those seeking basic information about NF1: parents, patients, medical providers, and teachers. Their questions greatly informed our work and inspired this project and so serve as its framework.

Site Contents
To meet this goal, we've provided information in several forms. The keystone of the site is a consultation video in which parents get information about their child, who was recently diagnosed with NF1. If you have time only to take in one element of the site, we encourage you to view this material. Additional videos provide information about other aspects of NF1 and perspectives from people with NF1 or their family members.

Other parts of the site are text entries organized around frequently asked questions. These can be found by using the home page or the site map. In several of these pages you'll find animated illustrations that will help clarify inheritance patterns, how new mutations occur, and how a neurofibroma grows. The text pages also include relevant video excerpts and links to an enhanced glossary with photographs of terms mentioned.

Under the "Are other resources and tools available?" link, you'll find three printable forms we have created to help you keep track of medical information and appointments.

All of the site contents can be viewed at a glance by visiting the site map.

Living with Uncertainty
To some extent neurofibromatosis is an unpredictable condition. It is hoped, however, that access to accurate information will make this uncertainty easier to live with and to understand.

Bruce R. Korf, M.D., Ph.D.
and the production team,
Understanding NF1