Neurofibromatosis Awareness Day Date in the current year: May 17, 2024

Neurofibromatosis (NF) is an umbrella term for three genetic conditions in which tumors, usually benign, grow in the nervous system: neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis. They are caused by different mutations on different chromosomes, which can be inherited or occur spontaneously, and have different symptoms. NF1 is the most common type of the disease, whereas schwannomatosis is the rarest.

In NF1, the nerve tissue grows tumors on the peripheral nerves (neurofibromas). Although these tumors are typically benign, they can cause serious damage by compressing nerves and other tissues. Common symptoms include skin abnormalities (soft bumps under the skin and hyperpigmented spots), Lisch nodules (pigmented spots on the iris), and scoliosis. Children with NF1 may have learning and behavior problems.

The most characteristic symptom of NF2 is hearing loss caused by the pressure tumors cause on the acoustic nerve. It may be accompanied by dizziness, nausea, and headaches. Other symptoms may include balance problems and cataracts. Patients with NF2 sometimes have skin symptoms similar to that of NF1, but not necessarily. The main symptom of schwannomatosis is localized pain due to the pressure of nearby tumors on tissues and nerves.

Like with many rare genetic disorders, there is no cure for neurofibromatosis. Tumors may be removed surgically, but sometimes the benefits of surgery are not worth the risk. For example, the removal of tumors on the spinal cord carries a small risk of paralysis in case the spinal cord is damaged during surgery. For smaller tumors, radiotherapy may be an option, but it is not recommended in children. Chemotherapy may be used to treat tumors of the optic nerve.

In most cases, the preferred treatment for NF involves regular monitoring for signs of complications that may necessitate surgery. Patients with NF2 may benefit from hearing aids, and chronic pain pay be managed with prescription pain medications.

Neurofibromatosis Awareness Day is observed annually on May 17, but neurofibromatosis organizations around the globe organize awareness evens throughout the entire month because May has come to be regarded as Neurofibromatosis Awareness Month. The main goals of World NF Awareness Day are to raise public awareness of neurofibromatosis, support NF patients and their families around the globe, and promote neurofibromatosis research.

There are many ways to observe NF Awareness Day. You can learn more about the disorder and share the information you’ve learned with others, wear a blue and green awareness ribbon to start conversations about neurofibromatosis, donate to an organization that supports NF patients or funds NF research, organize an awareness event or a fundraiser in your community, and spread the word on social media with the hashtags #NeurofibromatosisAwarenessDay and #WorldNFAwarenessDay.

Another great way to raise awareness about neurofibromatosis is to reach out to your mayor or city council and ask them to join the Shine a Light campaign. Shine a Light is an international grassroots initiative that raises NF awareness by lighting up landmarks in blue and green on World NF Awareness Day or throughout May. In 2022, 575 locations in 14 countries were lit up for the neurofibromatosis cause, including the Story Bridge in Brisbane, Australia, the Royal National Theatre in London, UK, and Niagara Falls.