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Patient Stories

Rare Disease Day 2019 Notes and Successes

This year, NORD launched the #ShowYourStripes awareness campaign in time for Rare Disease Day (RDD) with a goal of increasing attention on rare diseases and engaging our community. Judging by the number of events,… Read More

Misconceptions about living with a rare disease – the community weighs in

A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for Read More

Ben’s Story in Honor of Rare Disease Day

The following story was submitted by Leah Schust in honor of Rare Disease Day. In this story, Leah shares her family’s journey of searching for and receiving a diagnosis for their son,… Read More

Connor’s Story in Honor of Rare Disease Day

The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for their son,… Read More

India’s Story in Honor of Rare Disease Day

The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for their daughter,… Read More