A family smiles at the camera. The youngest daughter Jasmine, lives with recessive dystrophic EB.

This week (25th-31st October) is #EBAwarenessWeek, a week dedicated to increasing awareness of the incredibly painful genetic skin blistering condition, epidermolysis bullosa (EB).

In the most severe cases EB can be very visible and can affect multiple areas of the body, however in other cases such as with EB simplex, (70% of all cases), it can be less visible and affect only certain areas of the body such as the feet. In every case though, EB leads to excruciating pain and can have a devastating impact on the patients physical and mental wellbeing. In severe cases, EB can sadly be fatal.

Due to lack of awareness, living with a rare condition, like EB, means you are more likely to face misdiagnosis, treatment inequality and isolation. 

DEBRA UK President Simon Weston CBE and Vice President Graeme Souness will be busy raising awareness this week with TV and radio interviews. We’ll be sharing updates (and lots more) on our Facebook, Twitter (X), Instagram & LinkedIn, so keep an eye out and help us share these important messages.


How else can you help this EB Awareness Week?

  • Share your story of life with EB on your own social media channels using the #EBAwarenessWeek and tag DEBRA UK.
  • Read some of the courageous stories of people living with EB on our EB stories blog. Or get in touch if you'd like to learn more about sharing your story.
  • Watch some videos about EB our YouTube channel.
  • Start a conversation with friends, family or colleagues about EB.
  • Help strengthen the EB community and become a DEBRA member - the more members we have, the easier it is for us to show the true impact of EB. It also helps us lobby with the government and other organisations to improve services available for everyone living with EB.
  • Help us find new members - if you know anyone else living with EB, please let them know we’re here to help. There are so many ways our Community Support Team can help people living with EB.
  • Get involved and help shape our services - find out more about how you can get involved as a DEBRA member.


Thank you for your support. Together we can #StopThePain of EB.