We put our members’ voices at the heart of everything we do at DEBRA. So if you’d like to use your experience to shape the future of our EB services, decide what research we’ll fund next or to improve our events, there is plenty to get involved with. Everyone who gets involved makes an enormous difference to us and to the whole community.
If you are a member you can sign up to our involvement network to receive emails about new opportunities as they come up.
Sign up to our involvement network
Your stories raise awareness and inspire support. Find out about the different ways you can share your story with us. Read more
Find out how you can use your lived experience of EB to improve the support for EB. Read more
Our flagship study to understand what living with EB means to you. This study will shape everything we do at DEBRA and play a vital part in lobbying for EB support and funding. Read more
If you or a family member live with EB, are a carer or someone who works with people affected by EB, then you can become a DEBRA member. Find out how. Read more
Whether it’s helping decide what research to fund next, or joining a patient panel for a new research project, you can use your experience to help us as we search for treatments and cures. Read more
Find out about the different ways our amazing volunteers support us, and see if you’d like to join them. Read more
Find the latest member events that you could join to connect with others living with EB. Read more
You can help us to raise awareness of EB and the need for additional funding to support drug repurposing. Read more
Help us ensure that our marketing and communications reflect our members' voice. Read more
We welcome your feedback. Please let us know if you have any suggestions for improvements to our EB information. We’d also love to hear from you if you think we are doing something well. Read more