Pennsylvania's Rally for Rare: Where Community Feels Like Family
- Nevus Outreach
- May 22
- 1 min read
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. Families traveled from near and far, with attendees ranging from infants to college students, all united by shared experiences and deep connections. One especially touching moment came from a college-aged attendee, Natalie Hoffman, shared that she’s choosing to skip a family vacation to attend the 2026 conference alone—simply because the in-person connections mean that much to her.
These regional meetups are becoming a powerful way to build community between conferences. They’re easier to organize, less expensive, and more accessible for many families—which means more frequent moments of connection. Throughout the day, families opened up about their CMN/NCM journeys—discussing everything from treatment decisions and bullying, to building confidence in our kids and the emotional toll on siblings. Despite not all knowing each other well beforehand, the kids quickly bonded, playing games and laughing like lifelong friends. Their instant connection reminded us how naturally this community supports one another.
While the kids played, parents, grandparents, aunts, uncles, and cousins shared stories and support, forming new bonds of their own. It was an emotional, uplifting reminder of how important it is to feel seen, heard, and understood. We left the event with full hearts and a stronger sense of belonging. Cara’s daughter, Winnie, put it best, “she can’t wait for the next cool skin event”!
Would you like to share your story?
Visit: nevus.org/shareyourrare
Thank you for creating a space where everyone Space Waves Game feels understood, valued, and like family.
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