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
This EB Awareness Week, we are launching an important initiative to enrich our information of individuals impacted by Epidermolysis Bullosa (EB). Our goal is to confirm and collect crucial data about our community members —patients and caregivers.
If you live with EB or care for someone with EB, play your part by verifying or updating your information!
- Why Contribute? By updating and confirming your details, you're helping to ensure accurate representation of the EB landscape in the US, advance advocacy efforts, and drive EB research forward. Your participation also helps us tailor our services and targeted support.
- Safe and Secure: Your data is protected. All information is completely confidential and aggregated; we only use it to strengthen our community and amplify our collective voice.
- Get Started: Enter your details in just a couple minutes to confirm or update your profile and together we can create a stronger, more informed EB Community.
This EB Awareness Week, we’re exploring some key aspects of life with Epidermolysis Bullosa (EB) through powerful video conversations led by EB Community member, Ariana Covarrubias.
Use the power of social media to help drive awareness and action among your followers! We’ve created a Social Media Toolkit to make it easy to spread the word.
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
Host a virtual run, cooking night, or happy hour! Or start an online fundraiser with our easy-to-use DIY fundraising platform. We’re here to help you every step of the way.
Email Jason at jason@debra.org to get started.
One way to engage your elected and public officials while also raising awareness is to obtain an EB Awareness Week Proclamation in your city or state.
Learn more
Donations make a direct impact on the thousands of individuals who live with EB in the United States.
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.
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.
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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.
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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!
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