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.

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.