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

What is wrong with me?

by ElinFiona published 1 day ago
One comment

Have you ever felt a vacuum moving through your arms and legs, like your inner skin are ripped off? This happened to me January 2016. It was extrem...

The truth about my sickness

by cristian-123 published 5 months ago
One comment

These short nine years in my life have not been easy for me and my family because I suffer very painful injuries in my skin, which are not easy to ...

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.