Welcome to
Neurofibromatosis Awareness!
If you've seen our poster with the slogan "Tumors Suck but we are all in this together," you're already taking the first step in understanding and supporting those affected by neurofibromatosis (NF). Here's what you need to know:
What is Neurofibromatosis?
Neurofibromatosis, commonly known as NF, encompasses three genetic disorders characterized by uncontrollable tumour growth on nerves throughout the body, brain, and skin. It's more common than you might think, affecting 1 in 2,500 people worldwide. Despite its prevalence, NF often goes unrecognized and lacks sufficientunderstanding within the medical community.
The Impact of NF
NF can lead to a range of challenges, including blindness, deafness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and an increased risk of cancer. More than half of those with NF will develop significant disfiguring tumours on their skin, often leading to bullying and victimization experiences.
How You Can Help
Your donations directly support medical care, patient support, and advocacy efforts aimed at improving the lives of those with NF. Every contribution makes a difference in our journey toward finding effective treatments and, ultimately, a cure.
Join us in our mission by volunteering your time and skills. Whether you can offer support at events, raise awareness online, or contribute in other ways, your involvement strengthens our community and brings us closer to our goals.
Explore our website to dive deeper into the world of NF. Educate yourself, share information with others, and help break the silence surrounding this condition. Knowledge is power, and together, we can make a difference.
Follow us on Facebook and Instagram to stay updated, share stories, and amplify our message. Together, we can raise awareness, reduce stigma, and build a supportive community for everyone affected by neurofibromatosis.