Born in Los Angeles with CMN, Valentina endured seven cosmetic surgeries her doctors said were “necessary.” Looking back, she knows they weren’t. After losing her mother to breast cancer, her sisters became her greatest support. Now 26, Valentina is a photographer and filmmaker in the Pacific Northwest. Finding Nevus Outreach felt like surfacing for air—she’s no longer alone. Her CMN, once a source of fear, has become her superpower of courage and resilience.

When Caitlyn Neuendorf welcomed her daughter Reece, her instincts told her something wasn’t right. What began as reassurance from doctors quickly turned into fear as specialists diagnosed Reece with Giant Congenital Melanocytic Nevi (GCMN), a rare condition affecting 1 in 500,000 births. Their journey reflects the isolation, anxiety, and resilience families face—and the hope found through connection and community.

Your voice matters! This May, I joined fellow moms at Coalition of Skin Diseases' (CSD) Hill Day, representing Nevus Outreach. We shared our families' rare disease journeys with lawmakers, advocating for crucial policies like the Safe Step Act. Our personal stories amplified the need for change, proving collective action truly impacts lives.

Aussie families united for the first-ever nevus gathering! 🎉 Partnering with Rally for Rare, Nevus Outreach helped launch Nevus Australasia Foundation. Over 40 attendees, including 10+ nevus owners, connected in a heartwarming picnic. Inspired by his US experience, host Steven Bouris is building vital support. The Foundation will empower families & foster community. ❤️

Summer just got a whole lot warmer — Campfire Chats are here! Join Nevus Outreach all summer long for our new Live Series, featuring powerful conversations, expert insights, and real stories from the CMN community. From mental health to medical research, advocacy to connection — there’s something for everyone.

The Rally for Rare event in Pennsylvania was nothing short of incredible. From the moment guests walked into our private space, it felt more like a family reunion than a first-time gathering.

From hiding to shining one woman's journey with CMN and why the community needs each other.

As the attendees talked, it became clear just how powerful these small gatherings can be. Stories were exchanged, support was offered, and a strong sense of understanding filled the room.

The recent Nevus Outreach rally in Denver radiated warmth, connection, and a powerful sense of community. For many families, including first-time attendees, the event offered a unique opportunity to connect in person with others who share similar experiences.

The Rally for Rare event in Boston was just the beginning. I look forward to many more gatherings, conversations, and moments of support that reinforce what I have learned on this journey: We are never alone, and together, we can make a difference.

Rare Disease Day rally bloomed with connection. Though our conditions are rare, isolation vanished as we gathered, a small group united by something deep. Stories, hugs, laughter, tears – we created space to be seen. At "Tons of Fun," strangers found kinship, honoring Allison's joyful, fierce spirit. Though she's gone, her strength lives on, reminding us that "rare" doesn't mean alone.

Become a Challenge Champion for Nevus Outreach by raising awareness and funds to support our mission in a fun way.

“If I was going to run this race, I was going to run it for Raya. This is the perfect platform to raise awareness and funds for CMN.

CMN Awareness Day! Mark Sept 28th & join the challenge (Sept 22-28): share stories, raise awareness & celebrate the CMN community!