National Epidermolysis Bullosa
Awareness Week

In 2005 and 2006, many American families who have been impacted by Epidermolysis Bullosa, a rare but extremely devastating genetic disease, worked hard to convince legislators to enact National Epidermolysis Bullosa Awareness Week, in order to raise public awareness and understanding about the prevalence of EB, the impact it has on families, and the need for additional research toward finding a cure.

In 2006, the House of Representatives and the Senate voted to formalize the last week of October of every year as National Epidermolysis Bullosa Awareness Week.

This is the inaugural year of our special awareness week, and the people of the United States and interested groups are encouraged to support the week through appropriate ceremonies and activities to promote public awareness and to foster understanding of the impact of EB on patients and their families, especially by participating in the EB Relay and associated Rallies!