Welcome - Epidermolysis Bullosa (EB) Community

What is Epidermolysis Bullosa (EB) ?

Epidermolysis Bullosa is a group of rare, inherited disorders that affects skin and mucous membranes. The clinical picture ranges from mild to severe. Below, you'll find testimonies from patients who live with this genetic disease.

Source: Participating patient organizations visible below

Epidermolysis Bullosa (EB) Resources

More members stories

Latest Member Stories

Living with EB.

by padragovits published 5 months ago
One comment

At a very young age I remember going to a million doctors having skin graphs and blisters cut open and sent off for biopsies. After years of trying...

Newborn Family Member with EB

by kelsiebrake published 12 months ago
One comment

My cousin's baby was just born with EB and they are having a lot of extra costs trying to stay up at the hospital and getting the baby the required...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.