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Patient Stories

Girl in red hat looking at white horse.

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

Kala smiling with her son Braxton

#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