Patient Stories
Scleroderma and Horses: Whitney’s Rare Disease Day Story
From the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I still be able to… Read More
Rare Disease Day 2022: Grace’s Story
I am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years.
There are so many ways my condition has affected my life in both bad and surprisingly good ways. On one… Read More
#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day
I am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU).
My biggest mission since my son was born was to raise awareness, far… Read More
Removing the Obstacles: Steven’s Rare Disease Day Story
I was born with a rare genetic condition known as Congenital Insensitivity to Pain (CIP), which leaves an individual unable to sense physical pain. This “disease” or condition, as I prefer to call it,… Read More
Community, Action and Being Grateful: Rowan’s Rare Disease Journey
Our journey to the rare disease community was somewhat lengthy, as it is for many families. The day my son Rowan was born we knew… Read More