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World Neurofibromatosis Awareness Day

Neurofibromatosis is not just a mouthful; it’s also a disfiguring and sometimes painful genetic disorder, which as of yet has no cure or means of prevention.

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Partner with NF advocacy organizations to drive awareness, research funding, and patient support through blue-light landmark activations and educational content.

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Light up your building blue: join the global movement to raise NF awareness and support research
Learn the early signs of NF1 and NF2—knowledge saves lives and enables early intervention
Share patient stories and breakthrough research updates to inspire hope and drive donations to NF research
Host a blue-themed community event or webinar featuring NF specialists and patient advocates

History

The condition has been around for centuries, with a number of records describing patients with persistent ‘warts’ and what would become known as ‘cafe au lait’ spots.

There are two types of neurofibromatosis:

NF1 can be spotted early on with the appearance of flat brown birthmarks, or freckles in places not normally expected. This type of neurofibromatosis also manifests itself with lumps and bumps on the skin, called neurofibromas. Because it can cause learning difficulties, it is important that it is picked up early on in a child’s life.

The second type, NF2, tends to start showing itself in teen years or later. It appears as nervous system tumors, which tend to form on the brain and on the spine.

Although the tumors found in NF2 are usually not cancerous, they can cause some health problems such as deafness or hearing loss and some problems with mobility.

Unlike NF1, if you have NF2 you are much more likely to need operations or treatments for the brain or spinal tumors at some point in your life. For some, it is possible to have the small tumors surgically removed, and this is often an option for sufferers who find that the tumors are causing issues in mobility.

For a large number of people with neurofibromatosis, the symptoms are more than mild enough to get on with a normal productive life. In some extreme cases, however, tumors can cause cosmetic issues and as a result, psychological trauma.

World Neurofibromatosis Awareness Day is here to improve public knowledge and understanding about this disease. Since its founding in the early 2020s, this event has been officially declared by a number of entities, including governors of Alabama and North Carolina.

How to celebrate

Improve Knowledge About NF

Like many genetic diseases, there is no cure for neurofibromatosis, but awareness days such as this were created to ensure that research into it can continue to make a difference. One of the biggest steps in beating an illness is to learn about it – and even if you do not suffer from neurofibromatosis yourself, supporting those who do is what this day is about!

Shine a Light on NF

In some places, landmarks and buildings are encouraged by city officials to light up their locations in blue in celebration of World Neurofibromatosis Awareness Day. The London Eye ferris wheel is just one of the many famous places that has been lit up blue in honor of this important event.

FAQ

What are the main differences between NF1, NF2, and schwannomatosis?

Neurofibromatosis type 1 (NF1) usually appears in childhood with café au lait birthmarks, freckles in unusual areas such as the armpits or groin, and soft skin tumors called neurofibromas; it can also affect learning and bone growth. Neurofibromatosis type 2 (NF2) is rarer and typically appears in the teen years or adulthood with tumors along the nerves of the brain and spine, especially the hearing nerves, which can lead to hearing loss, balance problems, and vision changes. Schwannomatosis is related but distinct and is characterized by multiple schwannomas (tumors of the nerve sheath) on peripheral nerves and sometimes the spine, often causing chronic pain, but usually without the café au lait spots or vestibular (hearing) tumors seen in NF1 or classic NF2.

How is neurofibromatosis usually diagnosed?

Doctors typically diagnose neurofibromatosis based on a combination of clinical signs, family history, imaging, and sometimes genetic testing. For NF1, characteristic skin features such as multiple café au lait spots, freckling in skin folds, and neurofibromas, along with eye findings and bone changes, form part of established diagnostic criteria. NF2 and schwannomatosis are often suspected when people develop multiple nerve sheath tumors on MRI scans, especially tumors on the hearing and balance nerves in NF2, and are confirmed with a mix of imaging patterns, family history, and gene testing. Because findings can evolve over time, children at risk are often followed with periodic exams as they grow.

Can neurofibromatosis skip a generation or occur in someone with no family history?

Neurofibromatosis follows an autosomal dominant inheritance pattern, which means a person with NF has a 50 percent chance of passing the altered gene to each child. However, up to half of NF1 and NF2 cases result from a new (spontaneous) mutation in a person with no prior family history of the condition. Once that mutation occurs in one individual, it can then be passed on to future generations. What sometimes looks like “skipping a generation” can also reflect very mild signs in a parent that were not recognized until a child is diagnosed.

What health complications can neurofibromatosis cause beyond skin bumps or tumors?

Although many people with neurofibromatosis have mild symptoms, the condition can affect multiple body systems. Possible complications include learning and attention difficulties, headaches, chronic pain, curvature of the spine, bone deformities, vision problems from optic pathway tumors, hearing loss and balance problems from vestibular schwannomas, high blood pressure, and a small increased risk of certain cancers. Not everyone experiences these problems, but regular medical follow up is important so that emerging issues can be detected and treated early.

How is neurofibromatosis managed if there is no cure?

Management focuses on monitoring for complications, treating tumors that cause problems, and supporting learning and emotional health. Care often involves a team that can include neurologists, dermatologists, geneticists, ophthalmologists, ear, nose and throat specialists, surgeons, pain specialists, psychologists, and educational professionals. Options may include surgery to remove symptomatic tumors, radiation or targeted drug therapies in selected cases, hearing implants for NF2-related deafness, physical and occupational therapy, and tailored school support. Regular checkups allow doctors to track growth, blood pressure, vision, hearing, and any changes in tumors over time.

Does everyone with neurofibromatosis have visible signs on their skin or face?

Not everyone with neurofibromatosis has obvious outward signs, and some people have such mild skin changes that the condition is only noticed when complications arise or a relative is diagnosed. NF1 often includes visible café au lait spots and skin neurofibromas, but their number and size can vary widely from person to person. NF2 and schwannomatosis may cause few or no external changes and instead present mainly with hearing loss, balance problems, pain, or neurologic symptoms. This wide range of appearances is one reason neurofibromatosis is often misunderstood by the public.

What kinds of emotional and social challenges can people with neurofibromatosis face?

People living with neurofibromatosis may deal with anxiety, depression, body image concerns, bullying or social stigma, chronic pain, fatigue, and uncertainty about future health. Children can struggle with learning differences and self-esteem, while adults may worry about relationships, work, and passing the condition to children. Counseling, peer support groups, accommodations at school or work, and accurate information about the condition can all help. NF-focused organizations emphasize that emotional health is as important as medical care and encourage families and individuals to seek psychological support when needed.