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From Hiding to Shining - my journey with CMN and why we need each other
From hiding to shining one woman's journey with CMN and why the community needs each other.
NANÉE
6 days ago2 min read
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Heartwarming Connections: The Tulsa Nevus Outreach Rally
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.
Nevus Outreach
May 101 min read
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Stronger Together: Building a Nevus Community One Story at a Time
The Nevus Outreach Rally for Rare New York, was filled with warmth, laughter, and an incredible sense of community.
Nevus Outreach
May 62 min read
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More Than a Denver Meetup: Finding Connection in the Nevus Community
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.
Nevus Outreach
May 21 min read
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A Full Circle Moment: Hosting My First Rally for Rare Event in Boston
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.
Danielle Bestoso
Apr 293 min read
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Together in the Rare: Honoring Allison in San Antonio, TX
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 Outreach
Apr 262 min read
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Policy & Progress: What’s at Stake for the Nevus Community — And How You Can Take Action
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.
Nevus Outreach
Apr 235 min read
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Reflecting on Connection and Community: Rally for Rare Orlando
Small but mighty! Nevus Outreach's Orlando Rally for Rare on 3/8 brought heartfelt connections & lifelong support insights.
Danielle Bestoso
Apr 82 min read
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The Power of Connection: Reflecting on the Rally for Rare Experience in Kansas City, MO
Missouri's Rally for Rare United Five States! Families with CMN connected, shared experiences, and found invaluable support.
Nevus Outreach
Apr 22 min read
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