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EB Awareness Week 2024
This week (25-31 October) is #EBAwarenessWeek2024, 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.
This EB awareness week our focus is twofold:
- We want to ensure as many of our current members access the EB community support, information, resources, and member benefits that are available to them through DEBRA
- We want to attract new members so that we can support as many people with all forms of EB, as possible.
Please watch our new ‘Become a DEBRA member’ video below as a useful reminder about what we can offer you and your family if you live with EB. From emotional support, to highly discounted holiday homes that provide vital respite opportunities, to grants for items to help you live better with EB, we’re always here to support the EB community.
How can you help this EB Awareness Week?
Help us find new members
Do you know anyone else living with EB who isn’t already a DEBRA member? If so, please share this video with them and let them know about the various ways in which DEBRA could support them, or simply tell them about us!
As a gesture of thanks we’ll enter you and the person you refer for DEBRA membership into a draw where you could win one of the following prizes:
- £200 DEBRA UK holiday home voucher
- £100 gift voucher
- Bamboo sock bundle
All the new applicant needs to do is add the code NEW24 and your name on their membership application form. Read the full prize draw terms and conditions here.
Join us on social media
Every day, we’ll be sharing posts on our social media accounts to raise awareness of not just EB, but what DEBRA does for the EB community and the support we can offer. By sharing our posts on Facebook, Instagram & LinkedIn, you can help us reach as many people as possible.
What else to look out for this EB Awareness Week
- Media interviews- DEBRA president, Simon Weston CBE will be joined by DEBRA member and ambassador, Vie Portland talking about EB with a particular focus on EBS, the impact it has on her life, and what the listeners should do if they suspect they have EBS. The objective of these interviews is to raise awareness of EBS with the public, and GPs, and to reach people with EBS who may not be aware of DEBRA and the support we offer.
- New comic book- We will be launching a brand-new comic book for our DEBRA members. Look out on our social media channels to find out more early next week!