National Epidermolysis Bullosa (EB) Awareness Week | Annually October 25-31

DebRA of America EB Awareness Week 2013 Logo

National Epidermolysis Bullosa Awareness Week (Annually, October 21-31), 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, #EBawarenessweek is now recognized annually as October 25 through 31. Read the official National Epidermolysis Bullosa Week press release, which includes 15th Annual Benefit details.

BE PART OF THE CURE

DebRA of America encourages friends and family of people living with EB or who have lost a loved one to this disease to promote National Epidermolysis Bullosa Awareness Week by doing one or more of the following activities:

 
  1. Join and share DebRA's virtual Epidermolysis Bullosa Awareness Week Facebook event.
  2. Write to your local media (newspaper, radio, TV station, town websites) about EB. (“Sample Letter”)
  3. Share DebRA literature within your community, work, schools, place of worship, community center, supermarket, etc. Download the DebRA EB Pamphlet to email to friends. Call 212-868-1573 or email events [at] debra [dot] org to request printed (EB) pamphlets.
  4. Raise money for EB research by selling DebRA Awareness Bracelets.
  5. Ask your employer to have a "Denim Day" to benefit National (EB) Awareness Week.
  6. 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 to eradicate 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