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Patient Stories

Gina and Gia’s Story in Honor of Rare Disease Day

My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU,… Read More

Wyatt’s Story in Honor of Rare Disease Day

This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my… Read More

Zuhriah’s Story in Honor of Rare Disease Day

This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started… Read More

Tucker’s Story in Honor of Rare Disease Day

This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to,… Read More

NORD’s Work with FDA Gives Patients a Chance to Be Heard in Drug Development

By Debbie Drell, Director of Membership

My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she wouldn’t… Read More