Neurofibromatosis, Inc. is a website advocating for federal funding for NF research and the development of local NF organizations. It includes a description of the condition, help finding a doctor, and educational materials. 'We are the national non-profit network serving families and individuals affected by Neurofibromatosis'.
The Neuro Foundation has information sheets to help understand the condition, written for NF1 patients, their families, and teachers. They provide facts and practical help about the management of neurofibromatosis, as well as the latest research.