The Worst Disease You’ve Never Heard Of.

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that affects an estimated 1 out of every 20,000 births in the United States. 
 

EB in Depth

EB is a complex rare connective tissue disorder, encompassing many types and subtypes.

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Clinical Trials

Clinical trials are an essential part of the research process. Your participation can help propel the development of new treatments for EB.

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Personal Stories

Read the inspiring stories of the individuals who make up our EB Community.

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EB in the News

Catch up on the latest in EB news, including research updates, human interest stories, and more. 

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