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.

Nevus policy impacts research, care, life quality. This blog breaks down legislation, progress, and how YOU can advocate. Your voice shapes the future. Stay informed, get involved, drive progress.

Small but mighty! Nevus Outreach's Orlando Rally for Rare on 3/8 brought heartfelt connections & lifelong support insights.

Missouri's Rally for Rare United Five States! Families with CMN connected, shared experiences, and found invaluable support.

We Rallied for Rare in North Carolina.

We rallied for rare in Washington D.C.

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

Tears, triumphs, and a whole lot of heart! 😭❤️ Our weekend in Boston with Nevus Outreach was an emotional rollercoaster AND a success.

“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.

It was Spring 2010, and I was frantically trying to find more information about this “hairy nevus” that my doctor said my newborn had....

Updated April 2025: Congratulations to our 2025 Speech Competition Winners! The 2025 Global Speech Competition, co-hosted by Nevus...

Like A Marathon, Kristin takes every day of advocacy step-by-step. Advocacy, acceptance, and research are priorities ththey never expected.

Our 1,500,000. A number that defines our lives. Jace's rare disease has tested us, but we've found strength in our love and hope.

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

Weston's birth was a whirlwind. We discovered he had CMN & NCM. Through Nevus Outreach, we found strength and hope.