top of page
Rally for Rare with us to support Rare Disease Day! Take Action

Alyssa Huser
Feb 103 min read
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.
0


Merilee Vance
Jan 202 min read
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....
0

Whitney Casal
Dec 18, 20242 min read
Global Youth Speech Competition
Theme: Be Brave, Shape the Future Every voice holds power, and every story deserves to shine. This is more than just a stage—it’s your...
0


Nevus Outreach
Nov 26, 20244 min read
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.
1


Alyssa Huser
Oct 21, 20244 min read
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.
0

Nevus Outreach
Sep 19, 20243 min read
Global CMN Awareness Day September 28th!
CMN Awareness Day! Mark Sept 28th & join the challenge (Sept 22-28): share stories, raise awareness & celebrate the CMN community!
0


Kimberly Phelps
Sep 1, 20246 min read
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.
2
bottom of page