Empowering Rare Moms—Strategies, Strength, Support & Sisterhood.
1. Having the knowledge, confidence, means, or ability to do things
2. Making (someone) stronger and more confident
Rare Diseases
0
+
million people worldwide with a rare disease
100
million U.S. children with a rare disease
1
of patients diagnosed with a rare disease are children
1
%
Hi, I'm Nikki, a rare disease mom just like you!
When my son Miles was diagnosed with spinal muscular atrophy (SMA), a rare neuromuscular disorder, at just eighteen months old, everything changed. I was suddenly thrust into the world of rare disease parenting, caregiving, and advocacy.
That’s why I created Rare Mamas®—to offer strategies, strength, support, and sisterhood to fellow rare moms. Whether you’re newly diagnosed or years into the journey, I want to help you navigate this path with bold courage, fearless faith, and unrelenting hope.
Let’s awaken the inner fighter within, build community, and rise together!