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.
Click here to read the official press release for 2015 National Epidermolysis Bullosa Awareness Week.
BE PART OF THE CURE
debra of America encourages everyone to promote #EBweek by doing one or more of the following activities:
- Share the hashtag #EBweek on Facebook, Instagram, and Twitter. Ask your friends to use hashtag #EBweek on social media.
- Share your EBtoME with us!
- Join and share our online #EBweek Facebook event.
- Write to your local media (newspaper, radio, TV station, town websites) about EB. (“Sample Letter”)
- 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. Call 212-868-1573 or email events [at] debra [dot] org to request printed brochures.
- Raise money for EB research by selling debra of America Awareness Bracelets.
- Ask your employer to have a "Denim Day" to benefit #EBweek.
- Plan a debra of America Supporter Led Event fundraiser with friends, colleagues and family.
We hope you will participate in National Epidermolysis Bullosa Awareness Week by organizing a Supporter Led Event in your community and help us in our mission to spread awareness of Epidermolysis Bullosa (EB) and ultimately find a cure for this painful disease.
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.
DonateIf you cannot organize a Supporter Led Event this year, you can still be part of the cure by donating to debra of America.
DEBRA OF AMERICA FAMILY PHOTO ALBUMVisit our Family Photo Album on Facebook. This is a collection of photos of debra of America's extended family from across the United States. If you would like to be included in our "debra of America Family Photo Album" – please follow the instructions below:
- email an attached photo with the Subject: Family Photo Album to events [at] debra [dot] org
- include the name/age/EB-type of those in the photo
- include 1-sentence about what is taking place in the photo