“Growing up in Uganda, Naava was born with a facial CMN that made the world stare before they ever saw her. Today, she shares her powerful journey from feeling unseen to fully embracing her beauty, purpose, and identity. Her story is a reminder: you are loved, you are enough, and your uniqueness is your strength.

Born at just 27 weeks, baby Luiz entered the world fighting -and he has continued to inspire everyone around him ever since. Alongside the challenges of prematurity, Luiz was diagnosed with Giant Congenital Melanocytic Nevus (GCMN), a rare condition affecting roughly one in every 500,000 births. In this heartfelt blog, Luiz’s mother, Milena Servian, shares the emotional early days of uncertainty, courage, and overwhelming love.

When Jenna’s daughter, Dani, was born with a dark patch on her leg, fear and uncertainty took over- until a late-night hashtag search connected her with another mom, Kristin. Through Nevus Outreach’s online community, Jenna found not just information but hope, friendship, and strength. Today, Dani is thriving, and their families continue to share their journey-proof that one online connection can spark lifelong support and empowerment.

Attending the Nevus Outreach Conference can be a life-changing experience for families affected by CMN or NCM—offering rare access to medical experts, valuable education, and meaningful community connections. Because the event provides direct medical and psychosocial benefits, many families have been able to use their Health Savings Account (HSA) or Flexible Spending Account (FSA) to help cover costs.

When NICU nurse Laura welcomed her daughter Holland, she never expected a diagnosis she’d never heard of Congenital Melanocytic Nevus (CMN). Late one night, searching for answers, she found Nevus Outreach and with it, hope, understanding, and a community that changed everything. Read how one connection transformed her family’s journey and inspired her to help others find the same support.

Join Nevus Outreach for DAF Day: Amplify Your Impact on October 10! Nevus Outreach is thrilled to announce our participation in the...

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.

Back-to-school season brings fresh starts—and for families impacted by congenital melanocytic nevi (CMN), it can bring extra questions, too. Whether it’s helping your child prepare for curious classmates or ensuring teachers understand their needs, Nevus Outreach has your back. From expert-led videos to customizable student letters, we’re here to help your family start the school year informed, confident, and supported. Let’s face the year ahead—together.

While preparing for a Nevus Neighbor event, we rediscovered Stacey’s 2011 post about living with a foot GCMN—and connected her with Kayla, a mom seeking support for her daughter’s similar condition. That message sparked a powerful connection rooted in shared experience, empathy, and hope. It’s moments like these that show how Nevus Outreach empowers and unites, ensuring no one walks this journey alone

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.

Learn more about our nevus conference host family as you prepare to join us in Orlando 2026.

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. ❤️

WHO backs WHA Skin Diseases Resolution! 🎉 Landmark step for global skin health, impacting millions. Nevus Outreach community, your voice is crucial! Contact your Minister of Health & use GlobalSkin resources to urge support before May 2025 WHA. Let's make history!

CMN Patient Representatives together at the Naevus Global Conference In April 2025, representatives from CMN organizations across nine...

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 Nevus Outreach Rally for Rare New York, was filled with warmth, laughter, and an incredible sense of community.