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

DebRA of America EB Awareness Week 2014 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 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:

 
  1. Share the hashtag #EBweek on Facebook, Instagram, and Twitter. Ask your friends to use hashtag #EBweek on social media.
  2. Join and share DebRA's online #EBweek Facebook event.
  3. Write to your local media (newspaper, radio, TV station, town websites) about EB. (“Sample Letter”)
  4. Share EB Brochures within your community, work, school, place of worship, community center, supermarket, etc. Download the DebRA EB Brochure to email to friends. Call 212-868-1573 or email events [at] debra [dot] org to request printed brochures.
  5. Raise money for EB research by selling DebRA Awareness Bracelets.
  6. Ask your employer to have a "Denim Day" to benefit #EBweek.
  7. Plan a DebRA Local Event fundraiser with friends, colleagues and family.

DebRA hopes you will participate in National Epidermolysis Bullosa Awareness Week by organizing a Local 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.

 

If you are planning a Local Event between October 25-31 to celebrate this annual event, please let us know so we can include it on our website here and on our Facebook page here.

For more information, please call 212-868-1573 or email events [at] debra [dot] org

History

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:

  1. Supports the goals and ideals of National Epidermolysis Bullosa Awareness Week to raise public awareness and understanding of Epidermolysis Bullosa;
  2. Recognizes the need for a cure for the disease; and
  3. 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.

Donate

Donate Now

If you cannot organize a Local Event this year, you can still be part of the cure by donating to DebRA of America.
 

debra FAMILY PHOTO ALBUM

Visit our DebRA 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 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