May is Neurofibromatosis Awareness Month: Spreading Rare Disease Awareness

According to a story from the Children’s Tumor Foundation (CTF), the month of May is recognized as Neurofibromatosis (NF) Awareness Month. This is a time for spreading awareness about neurofibromatosis among the general public and in the medical field. The CTF is taking part in the event through its Make NF Visible initiative, which is meant to highlight the activities of the NF community and amplify the patient voice. 

About Neurofibromatosis (NF)

Neurofibromatosis is a genetic disorder that has an impact on a number of the human body’s functional systems. NF is caused by a genetic mutation; which gene is affected defines the type of NF that is present. These mutations can be heritable, but about half of cases are the result of spontaneous mutation. Symptoms include epilepsy, tumors affecting the nervous system and skin, spots on the skin, scoliosis and other skeletal deformations, learning and mental impairment, and vision disorders. People with the disorder also have greater risk of cardiovascular disease and cancer compared to unaffected people. The severity of symptoms can vary greatly; some people live fairly typical lives, whereas others are faced with serious quality of life challenges. There is no cure, and treatment generally involves managing serious symptoms and complications as they appear. To learn more about neurofibromatosis, click here.

Make NF Visible

This campaign aims to bring to light the challenges that people living with this group of diseases face through the use of first-person videos, photography, and storytelling. This disease affects 1 in 3,000 births or around 2.5 million people worldwide:

“Chances are you know someone with NF and may not know it, because they’ve kept their diagnosis hidden,” – Simon Vukelj, Chief Marketing Officer, Children’s Tumor Foundation

Check out the Make NF Visible video gallery to view a collection of powerful, first-person patient stories. Click here to learn more.

Also taking place in May is Shine a Light on NF, in which various buildings, monuments, and other urban structures are bathed in blue and green light, the official colors of neurofibromatosis awareness. Last year, this campaign included 300 locations found in 11 different countries. For 2022, 350 locations and 12 countries are already signed up to participate. Click here to learn more.

Don’t miss this opportunity to get involved in rare disease awareness.

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