Lived experience testimony for DEBRA
Gathering testimony from DEBRA members with lived experience of any type of EB.
As a patient support organisation, we are often asked to give statements about what it means to live with EB to other organisations. These can be organisations like NICE (National Institute for Health and Care Excellence) who are trying to decide whether to approve a new treatment for EB in the UK. Or it could be another medical organisation looking to understand what impact their work or their decisions could have on people living with EB.
While our Community Support team work and advocate every day for people affected by EB, we always try and gather more testimony from our members when we're asked for this information, because there is nothing more powerful than your own story of EB.
The deadlines can sometimes be quite tight for these requests, so by leaving your testimony for us now, we will be able to more quickly pull together our responses while keeping your voice central.
We'll always try to contact you before using your testimony, and you can specify at the end of this survey how you'd feel comfortable with us using your words.
Thank you for your help.