Each May, communities across the country and around the world come together to recognize Neurofibromatosis (NF) Awareness Month—a time to elevate voices, share stories, and bring greater attention to a condition that affects far more people than most realize. For the NF community, it’s not just about awareness—it’s about connection, resilience, and celebrating the individuals and families who live with neurofibromatosis every day.

This year, that spirit of connection is at the heart of the #ConnectingNF campaign. Throughout the month, supporters, advocates, and families have united with a shared goal: to make the word neurofibromatosis known in every household and to ensure that no one facing NF feels alone.

Despite affecting approximately 1 in every 2,500 births, neurofibromatosis is often referred to as “the most common disorder you’ve never heard of.” NF Awareness Month is an opportunity to change that—to turn unfamiliarity into understanding and silence into meaningful conversation.

At the center of this movement are the stories. From personal journeys to shared family experiences, these voices bring awareness to life. By sharing these experiences, individuals not only express their own journeys but also inspire others to speak up, seek support, and feel seen.

The NF Network continues to lead the charge by fostering community and encouraging participation. Our mission throughout May is simple but powerful: connect more people, amplify more voices, and expand awareness beyond the NF community. Through storytelling, social media engagement, and grassroots advocacy, we are building a stronger, more informed network of support.

But this movement doesn’t happen without you.

Everyone has a role to play in spreading awareness. Whether you are directly impacted by NF or simply want to support the cause, your voice can make a difference. Here are a few ways to get involved:

Share your story. Use the hashtag #ConnectingNF to talk about your experience or what NF awareness means to you.

Amplify the message. Share posts from the NF Network on social media to help reach new audiences.

Start conversations. Talk about neurofibromatosis with friends, family, and your community. Awareness often begins with a single conversation.

Get creative. Download and share images, or create your own to help spread the word.

Every post, every story, and every conversation brings us one step closer to a world where neurofibromatosis is widely understood and recognized.

As NF Awareness Month continues, the message is clear: connection creates impact. Together, by sharing, supporting, and speaking up, we can build a future where everyone affected by NF feels empowered, informed, and connected.

To share your story or get involved, reach out to admin@nfnetwork.org and become part of a growing movement dedicated to awareness, advocacy, and community.

Because when we connect, we create change. Visit here for more ideas. 

Find upcoming NF Events            Donate to NF          Stay iNFormed