The 24th-30th of October is #EBAwarenessWeek, a week dedicated to increasing awareness of the painful genetic skin condition, epidermolysis bullosa (EB).

EB, also known as 'Butterfly Skin', causes the skin to become very fragile and tear or blister at the slightest touch. There are four main types of EB, ranging from the mildest, in which the hands and feet are affected, to the most severe, which can have a devastating effect on any part of the body causing lifelong disability and pain. In severe cases, EB can sadly be fatal.



A Life Free of Pain

This EB Awareness Week we have launched our A Life Free of Pain campaign, aiming to raise £5m by the end of 2023 to develop treatments that will enable people to live free from the pain of EB.

Please take 5 minutes to watch Isla's story below.


We need everyone to do one small thing to make a big difference...


How can you help this EB Awareness Week?

  • Please like, comment and share our social media posts on Facebook, Twitter, Instagram & LinkedIn.
  • Watch Isla's story on our YouTube channel and show to friends, family, or share on social media.
  • Share your story of life with EB on your own social media channels using the #EBAwarenessWeek and tag DEBRA UK.
  • Start a conversation with friends and family about EB.
  • Share your story of life with EB.