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Patient Stories

Summerly’s Rare Journey

I am a parent to a daughter with genetic disorder 22q11.2 deletion syndrome (commonly known as DiGeorge syndrome). She was born on July 1, 2021 and diagnosed on July 23 through a chromosomal microarray… Read More

NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History

Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community and the last… Read More

What the Public Should Know: From the Mother of an Undiagnosed Child

I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We are trying IVIG treatments,… Read More

Two young boys playing outside leaning on a rock

Audrey’s Story in Honor of Undiagnosed Day

I am a parent of three children. Our two sons are medically complex with an unnamed syndrome. Through our parenting journey, we have faced epilepsy, autism, ADHD, global developmental delays, factor XI deficiency, hypoglycemia… Read More

Lisa in a Running For Rare tank top with her son Zane who is wearing a blue shirt

Zane’s Diagnostic Odyssey: His Mother’s Story in Honor of Undiagnosed Day

While in uterus, Zane had an abnormally large bladder that did not drain properly; however, no diagnosis was given at that time. The doctors monitored Zane closely starting around 20 weeks. He was suspected… Read More