About EB

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.

Learn More Clinical Trials

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

Learn More Personal Stories

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

Learn More Video Stories

Watch our videos to see the impact of EB on daily life. 

Learn More EB in the News

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

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