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.
Read the official resolution, H.Res. 335 from the Congressional Record
Activities & Ideas
Share Your Story
No one understands EB like the people who live it. Whether you have EB, care for someone who does, or support the EB Community, we invite you to share your story — in your own words, on your own terms — and help us raise awareness that reaches further.
Share Your Story
Spread the Word on Social Media
A single post can introduce someone to EB for the very first time. To make it easy, we've created a Social Media Toolkit with ready-to-use graphics and suggested posts you can share in minutes. Download it, post to your channels, tag debra of America, and add our hashtags — then watch awareness grow.
Get the Toolkit
Share Informational Flyers
Share our flyers within your community, workplace, school, supermarket, or place of worship. Print copies to hand out in person, or share them online by email or social media — every flyer is a chance for someone to learn about EB.
Download the Flyer
Host a Supporter Led Event or Online Fundraiser
Turn your passion into action by hosting your own event for EB Awareness Week. Whether it's a bake sale, a game night, a birthday fundraiser, or a virtual gathering with friends, your event brings people together, raises awareness, and funds vital support and research for the EB Community. We’re here to help you every step of the way!
Email Jason at jason@debra.org to get started.
Request an Official Proclamation
Help make EB Awareness Week official where you live. By requesting a proclamation from your mayor, city council, or governor, you put EB on the public record — and on your community's radar. It's a meaningful way to engage your elected officials, raise awareness, and show the EB Community they're seen.
Learn More
Make a Donation
Donations make a direct impact on the thousands of individuals who live with EB in the United States — funding vital programs and services, advocacy efforts, and research.
DonateHistory 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.
Related Resources
About EB
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