National Epidermolysis Bullosa Awareness Week | Annually October 25-31 | #EBweek

Debra of America EB Awareness Week 2019 Logo

National Epidermolysis Bullosa Awareness Week (Annually, October 25-31) is a time to increase awareness of Epidermolysis Bullosa (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. Click here to read the official resolution, H.Res. 335 from the Congressional Record.

Click here to learn about EB.

 

ACTIVITIES & IDEAS

debra of America encourages everyone to promote #EBweek by doing one or more of the following activities:

  1. Spread the Word on Social Media. 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. Click here to access graphics that you can download and share on your personal accounts to help raise awareness.
  2. Share Informational Flyers within your community, work, school, supermarket, or place of worship. Download the flyer here. You can print copies to hand out in person or feel free to share them online via email or social media!
  3. Host a Supporter Led Event or Online Fundraiser. Host a pasta night, bake sale, raffle, or a community walk! Or raise funds online with our easy-to-use DIY fundraising platform. We’re here to help you every step of the way. Contact jason [at] debra [dot] org to learn more.
  4. Request an Official Proclamation. One way to engage your elected and public officials while also raising EB awareness is to obtain an EB Awareness Week Proclamation in your city or state. Learn more here.
  5. Make a Donation. Donations make a direct impact on the thousands of individuals who live with EB in the United States. Click here to donate in honor of #EBweek.

For more questions about any of the above activities, please call 212-868-1573 or email staff [at] debra [dot] org


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.” Read Proclamation 5283 - National Epidermolysis Bullosa Awareness Week, 1984  (which established the very first 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.