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Neurofibromatosis Network

Leading NF Advocacy
Building NF Community

NF Awareness Campaign

May is Neurofibromatosis Awareness Month!

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 #UnveilingNF 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 NF Awareness Month frame to your Facebook profile picture. It's easy! Click here to get started.

2. Create an #UnveilingNF post. For the month of May, we are "Painting a New Portrait of NF" and sharing the beauty and stories behind the many faces of neurofibromatosis. Working alongside Rachel Mindrup, NF artist and mom to a son with NF1, our goal is to not only connect with even more NF families and individuals around the world, but also remind us why spreading NF awareness is so important and how we are all in this together. Using the hashtag #UnveilingNF, we want to hear YOUR NF story and what spreading NF awareness means to you!

Whether your inspiration is a family member, a friend, or yourself, we want to hear from you and why spreading NF awareness is important to you. When you're ready, share your photo and story on social media using the hashtag #UnveilingNF and tag us in the post!

3. Share your NF story with us! All month long, the NF Network will be sharing many 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 from you. 

4. The easiest way to help is to donate. As we continue to provide essential programs and resources to the NF community, the NF Network needs your help more than ever. Your contribution can make a difference now by providing crucial information to our community. For every $25 raised, we can provide 1 informational packet that contains vital information for those living with NF. Click the links below to give a gift today.