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March 3, 2022

TOPIC: Press Releases

Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Posted by Rohan Narayanan

NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community 

Washington, DC, March 3, 2022— Today, the National Organization for Rare… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Scleroderma and Horses: Whitney’s Rare Disease Day Story

Posted by Julie Ostroff
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 everything was about to change. Little did I know,… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Rare Disease Day 2022: Grace’s Story

Posted by Julie Ostroff

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 friends who isn’t playing sports or isn’t attending… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day

Posted by Julie Ostroff
Kala smiling with her son Braxton

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 and wide, about PKU and what a life with this disease means and looks like. It has become my personal goal to get my senators… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Removing the Obstacles: Steven’s Rare Disease Day Story

Posted by Julie Ostroff

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 to identify. I believe the biggest impact it has… Read More