Living with a rare disease?
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Do you have a rare disease?
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Created January 17, 2014 by
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 CNN.com:

 

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

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