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April 4, 2022

TOPIC: Rare Disease Day, Members

Rare Disease Day and the Spotlight on NORD Member Organizations

Posted at April 4, 2022 08:30 am by Rohan Narayanan

Rare Disease Day Recap

Rare Disease Day took place on February, 28, 2022 and successfully raised awareness for the 7,000+ rare diseases that impact over 300 million people globally. NORD is proud to partner with EURORDIS (Rare Diseases – Europe) and others all around the world to drive an international campaign that shines a light on rare diseases… Read More

February 28, 2022

TOPIC: Patient Stories, Rare Disease Day

Scleroderma and Horses: Whitney’s Rare Disease Day Story

Posted at February 2, 2022 05:30 pm 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 at February 2, 2022 02:45 pm 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 at February 2, 2022 11:30 am 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 at February 2, 2022 09:35 am 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