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Preston Is Truly One Of A Kind

  Preston Is Truly One Of A Kind A disorder is considered rare when fewer than 200,000 people in the United States has the condition. Some of us with rare disorders go to the emergency room when something goes wrong, it is after office hours and we do not have a choice, but when we[…]

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Rare Disease Day: Emi’s Courage

 Emi’s Courage When we receive letters from the parents of children with chronic and often rare diseases, the first thing parents tell us is about the strength and courage their children have. When we learned of Emi’s courage we knew we were learning about someone special. Jules daughter had a rare disorder and has often[…]

rare disease day

Rare Disease Day

Chronically Awesome: A Proud Rare Disease Day Partner “With research, the possibilities are limitless” Press Release: Today Is Rare Disease Day 2017: Today is #RareDiseaseDay 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases! With the theme of research,[…]