01May
Rare-Disease Database
Database of rare diseases with links to the National Organization of Rare Disorders (NORD).
About Me
Hi, I’m Nikki,
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!
a rare-disease mom just like you. My son Miles was diagnosed with spinal muscular atrophy (SMA), a rare, neuromuscular disease at the age of eighteen months old. I was thrown into a match I never expected. My inner fighter was awoken. I believe that, like me, you have a brave fighter within you. I want to help you approach the rare-disease journey with bold courage, fearless faith, and unrelenting hope. I want to create a community of brave rare mamas supporting one another.
Let's awaken your inner fighter and rise up!