Read the personal stories of members of the EB Community who share their experiences and offer insight into what it’s like to live with EB or have a loved one affected by it. 

Do you have a story to tell? If you live with EB or care for someone with EB, please email us at We’d love to hear from you! 

EB to Me

In 2014, we ran an “EB to ME” campaign that asked the Community to tell us, in their words, what EB means to them. 

Read their responses