Epidermolysis Bullosa (EB) is a rare genetic disorder that is painful and can lead to disability, disfigurement & early death. There is no cure or treatment today. EB makes the skin so fragile that the slightest friction causes blisters and skin tears. The eyes, mouth, throat and other internal organs are also affected.
The full 43 Minute Q&A is available for viewing (at no charge) by clicking the video below.
Other panelists include: Faye Dilgen, Susan Maksomski, Carrie Shotwell, and John T Smith. Moderator Kristy Steinau.