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Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

NF Awareness Campaign


May Is Neurofibromatosis Awareness Month. Take The Challenge!

Did you know that Neurofibromatosis affects more people than Cystic Fibrosis, Tay Sachs, Huntington's Disease, and Muscular Dystrophy combined, yet most people have never heard of it? We like to call it "the most common disorder you have never heard of."

We can change that! This year, we're asking you to help us spread the word and raise awareness for neurofibromatosis by joining our #NFStrong campagin! Our goal is to spread the word “neurofibromatosis” across social media so that it is known in every household.


Here's how you can help!

1. Add the #NFStrong frame to all your social media profile pics. It's easy, get started now at:

2. Share your NF story with us! All month long, the NF Network will be sharing your stories on our website and social media to show the world what NF is and who we are! Send an email to to tell your story or post it to social media and tag Neurofibromatosis Network! Whether you have NF yourself or have a loved one affected by NF, we want to hear your story. Together we are #NFStrong! 

3. Purchase and wear your #NFStrong t-shirt to spread awareness, just $15. Show us your #NFStrong muscles! 

4. The easiest way to help is to donate and help us continue our mission-related initiatives of education, advocacy, and support in our continued efforts of research towards better treatments and a cure for NF. No amount is too small, and we appreciate your support!