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Patient Stories

Ashlee’s Story in Honor of Rare Disease Day

was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis… Read More

Bradley’s Story in Honor of Rare Disease Day

My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. They sent us to… Read More

Olivia’s Story in Honor of Rare Disease Day

My oldest daughter, Olivia, was recently diagnosed with Barakat syndrome (Gata 3 or HDR syndrome). Though she is eleven now, we have been battling the kidney disease part since birth and Read More

Tristan’s Story in Honor of Rare Disease Day

You are featured in the 2021 Rare Disease Day international campaign as a patient “hero” from the United States. Why is Rare Disease Day important to you?

I‘m so honored to… Read More

Quality of Life and Butterfly Wishes

By Jill L. Pollander, RN, MSNDirector of Patient Services, NORD 

 I first met the Juneja family several months ago. It was an amazing telephone conference call… Read More