Living with a rare disease?
Joe Raedle/Getty Images
Do you have a rare disease?
Share your personal story with us.
Add your Story
Share this on:
Living with a rare disease?

What actually qualifies something as a rare disease? In the U.S., a rare disease is one that affects fewer than 200,000 people. There are more than 6,800 rare diseases, which affect 25 million to 30 million Americans, according to the Office of Rare Diseases Research, a part of the National Institutes of Health.


Some examples of rare diseases include Cystic Fibrosis and Huntington disease. An iReport about another rare disease, Stiff Person Syndrome, was the inspiration for this assignment.


We’re looking for people with rare diseases who would like to share their stories. What is it like living with a rare disease? Was it difficult to get a diagnosis? How has your life changed since diagnosis?


Share your personal story, as well as a photo of yourself. Your story could be part of CNN Health’s coverage.


Featured on


The shocking, stabbing pain disorder you've never heard of


Living with Stiff Person Syndrome: 'I'm a statue for your lawn'


Children face rare diseases with bravery


Living a full life with half a heart


Learning to dance in the rain: Life without immunity

Add your Story
iReports on this assignment
Latest | Most viewed | Most commented | Most shared | On CNN | Best in class
See more iReports
Add your Story Add your Story