National Neurofibromatosis Month 2023


United States

National Neurofibromatosis Month aims to raise awareness for this rarer type of disease. This awareness event also helps supporting organizations including The Children's Tumor Foundation secure funding toward a cure.

What Is Neurofibromatosis?

Neurofibromatiosis (NF) is the term for a set of three genetic disorders: NF1, NF2 and Schwannomatosis. NF is usually diagnosed in children; about 1 in every 3000 births are affected by NF1.

Each of these types causes tumors to develop and grow on nerves throughout the body.

NF1 is the most common form of neurofibromatosis and is characterized by pigmented spots on the skin, often referred to as cafe-au-lait spots. NF1 is also known as peripheral NF or von Recklinghausen's disease. Von Recklinghausen was a German physician who first discovered the neurological component of the disorder in 1882.

NF1 is also linked to other health complications including cardiovascular defects, learning disabilities (which affects up to 60% of people with NF1), and bone and other skeletal abnormalities.

The incidence of NF2, another type of neurofibriomatisis is much lower than NF1, affecting one in about every 25,000 births. NF2 is a disorder which causes tumors to develop on nerves in specific areas of the body. The area which characterizes NF2 are the eighth cranial nerves of the brain; tumors develop on these nerves which control hearing. People affected by NF2 can experience loss of hearing.

People with NF2 may develop tumors in other parts of the body. These include spinal cord tumors and other brain tumors.

The final type of NF is Schwannomatosis. This is the rarer form of NF affecting about 1 in every 40,000 births. Whilst there is a strong genetic link NF1 and NF2, only 10% of Schwannomatosis are thought to be inherited.

Schwannomatosis shares similarities with NF2, however it normally does not cause hearing loss. Instead a key symptom is chronic pain brought on by tumors which grow on nerves throughout the body.

National Neurofibromatosis Month is backed by the Children's Tumor Foundation and is supported by other organizations including NF Midwest.

To Find More About Neurofibrosis & Neurofibromatosis Awareness Month visit, The Children's Tumor Foundation.