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.

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* 1. Are you a DEBRA member?

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* 2. I am someone with lived experience of:

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* 3. Please choose all that apply to your experience:

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* 4. Where do you live?

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* 5. If you only had 100 words, what would you want to say about what is it like to live with, or to care for someone living with EB?

For this section, some people have given details of the challenges of everyday life that other people might not think about. Others have spoken about the physical or mental toll that the condition can take.
Others have spoken about the impact that EB can have on the entire family.

What is the most important message that you want to get across?

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* 6. What do you think of the current care or treatments that are available on the NHS now?
(We know there are no specific treatments available for EB at the moment, so what do you think of the treatments you do have access to?)

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* 7. Is there anything else you would like to add about living with EB, or the treatments available?

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* 8. Your details (optional)

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* 9. We will also try to contact you before using your testimony.  But if this isn't possible, are you happy for us to quote directly from your testimony (We can do this anonymously if you would prefer)

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