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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
3 days ago3 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
6 days ago2 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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Making Waves for CMN: Raleigh’s Rally Brings Families Together
We Rallied for Rare in North Carolina.

Nevus Outreach
Mar 283 min read
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Running for Raya and Nevus Outreach: Roger's Boston Marathon Journey
“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.

Alyssa Huser
Feb 103 min read
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Mentorship: Find a Beth; be a Beth
It was Spring 2010, and I was frantically trying to find more information about this “hairy nevus” that my doctor said my newborn had....

Merilee Vance
Jan 202 min read
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Like A Marathon, Kristin takes every day of advocacy step-by-step.
Like A Marathon, Kristin takes every day of advocacy step-by-step. Advocacy, acceptance, and research are priorities ththey never expected.

Nevus Outreach
Nov 26, 20244 min read
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Navigating the Unknown: Jace's 1:500,000 Rare Diagnosis
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.

Alyssa Huser
Oct 21, 20244 min read
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Weston's Journey: A Miracle Among Miracles
Weston's birth was a whirlwind. We discovered he had CMN & NCM. Through Nevus Outreach, we found strength and hope.

Kimberly Phelps
Sep 1, 20246 min read
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