Published June 24, 2022 by NORD
I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos …
Continue reading “Giving Back to the Community: Suzy’s Rare Journey”
Read morePublished June 10, 2022 by NORD
I am 17 years old and a high school junior with hEDS (hypermobile Ehlers-Danlos syndrome). I should be attending a performing arts high school for musical theatre, but that’s not …
Continue reading “Living Stronger: Jessica’s Rare Journey”
Read morePublished May 27, 2022 by NORD
Imagine being a healthy 30-year-old waking up one day to find yourself stumbling, fatigued, tripping and unable to walk. Following two trips to the emergency room, you are told to …
Continue reading “Raymond’s Journey to a New Normal”
Read morePublished May 13, 2022 by NORD
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 …
Continue reading “Summerly’s Rare Journey”
Read morePublished May 11, 2022 by NORD
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 …
Continue reading “NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History”
Read morePublished April 29, 2022 by NORD
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 …
Continue reading “What the Public Should Know: From the Mother of an Undiagnosed Child”
Read morePublished April 25, 2022 by NORD
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, …
Continue reading “Audrey’s Story in Honor of Undiagnosed Day”
Read morePublished April 19, 2022 by NORD
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 …
Continue reading “Zane’s Diagnostic Odyssey: His Mother’s Story in Honor of Undiagnosed Day”
Read morePublished February 28, 2022 by NORD
From the time I was three years old, my life has centered around horses. When I was diagnosed with my rare disease, diffuse scleroderma, my first thought was “will I …
Continue reading “Scleroderma and Horses: Whitney’s Rare Disease Day Story”
Read morePublished February 28, 2022 by NORD
I am a 16-year-old pediatric patient who has been struggling with Sjögren’s for years. There are so many ways my condition has affected my life in both bad and surprisingly …
Continue reading “Rare Disease Day 2022: Grace’s Story”
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