National Epidermolysis Bullosa Awareness Week (Annually, October 25-31) is a time to increase awareness of EB, to promote the need for a cure, and to spur advocacy on behalf of the thousands of individuals and families living with EB in the United States.
First legislated by Ronald Reagan and the United States Congress in 1984, #EBweek is now recognized annually as October 25 through 31.
Activities & Ideas
Use the power of social media to make your voice heard! Share your story on your Facebook, Instagram, Twitter, or LinkedIn and educate your friends and followers about EB.
Share flyers within your community, work, school, supermarket, or place of worship. You can print copies to hand out in person or feel free to share them online via email or social media!
Download the Flyer
If you are someone who lives with EB, a family member, or a medical professional, researcher, or industry partner in the EB world, you can join EBconnect.org for free! EBconnect.org is a private, online platform designed for the global EB Community to connect, collaborate, and learn from one another.
The 2020 Virtual DCC runs through the end of EB Awareness Week on EBconnect.org! Visit the “Events & Webinars” tab for on-demand and live webinars as well as fun virtual social activities.
History of EB Week
On October 11, 1984, President Ronald Reagan and the 98th Congress of the United States of America signed the Joint Resolution approving the week of November 25 through December 1, 1984, as the first-ever “National Epidermolysis Bullosa Awareness Week.”
On September 21, 2006 (U.S. Senate) and December 9, 2006 (House of Representatives) the 109th Congress of The United States of America declared that the last week of October annually will become “National Epidermolysis Bullosa Awareness Week”.
The bill declares that the annual dates between October 25-31: Supports the goals and ideals of National Epidermolysis Bullosa Awareness Week to raise public awareness and understanding of Epidermolysis Bullosa; Recognizes the need for a cure for the disease; and encourages the people of the United States and interested groups to support the week through appropriate ceremonies and activities to promote public awareness of Epidermolysis Bullosa and to foster understanding of the impact of the disease on patients and their families.
EB is a rare connective tissue disorder with many genetic & symptomatic variations. All forms share the prominent symptom of extremely fragile skin that blisters & tears with any friction.Learn More Our Mission
“Because the cost of doing nothing is too great” is an axiom that defines our mission and directs all of debra of America’s actions as an organization.Learn More Other ways to get involved
There are many ways that you can join the fight against EB. Start an event, host a fundraiser, volunteer, and more!Learn More