Scroll
To Top

Archives for: February 28th, 2022

Scleroderma and Horses: Whitney’s Rare Disease Day Story

Written by Julie Ostroff on February 28, 2022
Girl in red hat looking at white horse.

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 ride?” I was 28 years old, had the horse of my dreams, and was terrified that… Read More

Rare Disease Day: Grace’s Story

Written by Julie Ostroff on February 28, 2022

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 hand, sometimes my day-to-day life can be hard. It’s difficult to be the only one of your… Read More

Removing the Obstacles: Steven’s Rare Disease Day Story

Written by Julie Ostroff on February 28, 2022

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, has impacted my life in a multitude of ways that are not always easy for me… Read More

The Most Important Holiday Most Don’t Know: Celebrating Rare Disease Day

Written by Rohan Narayanan on February 28, 2022

NORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community

February 28, 2022, Washington, DC – Today is Rare Disease Day, a global celebration to raise awareness among the public and decision-makers… Read More