National Epidermolysis Bullosa Awareness Week | Annually October 25-31 | #EBweek
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 families suffering with the emotional, financial, and physical burden of the disease. Click here to learn about Epidermolysis Bullosa. First legislated by Ronald Reagan and the United States Congress in 1984, #EBweek is now recognized annually as October 25th through 31st.
BE PART OF THE CURE
debra of America encourages everyone to promote #EBweek by doing one or more of the following activities:
- Participate in the 2016 #WeFightEB Selfie Campaign
This #EBweek we want to celebrate the power of “We”! Let’s show the world that although we might be rare, we are not alone. From now through 10/31, snap a selfie with a #WeFightEB bracelet (get yours here) & share on your social media pages with the hashtags: #WeFightEB and #EBweek. Don’t forget to tag debra of America in your photo or post!
Why participate? Your selfie will help us fight EB! A friend of debra of America and EB advocate will donate $10 towards research for EB for each selfie that is posted with your #WeFightEB bracelet and tagged with debra of America. You can find debra of America on Facebook, Instagram, Twitter and LinkedIn.
- Share EB Brochures within your community, work, school, place of worship, community center, supermarket, etc. Download the debra of America Brochure to email to friends here.
- Host a work-place fundraiser! Get your colleagues involved in raising EB awareness. We’ll send you a special pack of our new #WeFightEB Awareness Bracelets to encourage donations within your office. For more information, please contact: gabrielle [at] debra [dot] org .
- Plan a debra of America Supporter Led Event fundraiser with friends and family. Host a pasta night, bake sale, raffle, or a community walk! Contact gabrielle [at] debra [dot] org to learn more about setting up your own event!
For more questions about any of the above activities, please call 212-868-1573 or email events [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.