Communications survey 2016

	1	2	3	4	5
The information that DEBRA provides to me about EB, best practice and research is sufficient.	The information that DEBRA provides to me about EB, best practice and research is sufficient. 1	The information that DEBRA provides to me about EB, best practice and research is sufficient. 2	The information that DEBRA provides to me about EB, best practice and research is sufficient. 3	The information that DEBRA provides to me about EB, best practice and research is sufficient. 4	The information that DEBRA provides to me about EB, best practice and research is sufficient. 5
I would value opportunities to exchange experiences and knowledge with other families living with EB.	I would value opportunities to exchange experiences and knowledge with other families living with EB. 1	I would value opportunities to exchange experiences and knowledge with other families living with EB. 2	I would value opportunities to exchange experiences and knowledge with other families living with EB. 3	I would value opportunities to exchange experiences and knowledge with other families living with EB. 4	I would value opportunities to exchange experiences and knowledge with other families living with EB. 5
I follow and/or take part in conversations about EB in online forums.	I follow and/or take part in conversations about EB in online forums. 1	I follow and/or take part in conversations about EB in online forums. 2	I follow and/or take part in conversations about EB in online forums. 3	I follow and/or take part in conversations about EB in online forums. 4	I follow and/or take part in conversations about EB in online forums. 5
I follow and/or take part in conversations about EB on blogs.	I follow and/or take part in conversations about EB on blogs. 1	I follow and/or take part in conversations about EB on blogs. 2	I follow and/or take part in conversations about EB on blogs. 3	I follow and/or take part in conversations about EB on blogs. 4	I follow and/or take part in conversations about EB on blogs. 5
I regularly socialise with other families living with EB where we exchange experience and knowledge.	I regularly socialise with other families living with EB where we exchange experience and knowledge. 1	I regularly socialise with other families living with EB where we exchange experience and knowledge. 2	I regularly socialise with other families living with EB where we exchange experience and knowledge. 3	I regularly socialise with other families living with EB where we exchange experience and knowledge. 4	I regularly socialise with other families living with EB where we exchange experience and knowledge. 5
I feel well informed about online communities/forums/blogs that talk about EB	I feel well informed about online communities/forums/blogs that talk about EB 1	I feel well informed about online communities/forums/blogs that talk about EB 2	I feel well informed about online communities/forums/blogs that talk about EB 3	I feel well informed about online communities/forums/blogs that talk about EB 4	I feel well informed about online communities/forums/blogs that talk about EB 5
I think DEBRA should do more to publicise online networking opportunities for families living with EB.	I think DEBRA should do more to publicise online networking opportunities for families living with EB. 1	I think DEBRA should do more to publicise online networking opportunities for families living with EB. 2	I think DEBRA should do more to publicise online networking opportunities for families living with EB. 3	I think DEBRA should do more to publicise online networking opportunities for families living with EB. 4	I think DEBRA should do more to publicise online networking opportunities for families living with EB. 5
I think DEBRA should create and run an online forum for families living with EB.	I think DEBRA should create and run an online forum for families living with EB. 1	I think DEBRA should create and run an online forum for families living with EB. 2	I think DEBRA should create and run an online forum for families living with EB. 3	I think DEBRA should create and run an online forum for families living with EB. 4	I think DEBRA should create and run an online forum for families living with EB. 5

The information that DEBRA provides to me about EB, best practice and research is sufficient.

The information that DEBRA provides to me about EB, best practice and research is sufficient. 1

The information that DEBRA provides to me about EB, best practice and research is sufficient. 2

The information that DEBRA provides to me about EB, best practice and research is sufficient. 3

The information that DEBRA provides to me about EB, best practice and research is sufficient. 4

The information that DEBRA provides to me about EB, best practice and research is sufficient. 5

I would value opportunities to exchange experiences and knowledge with other families living with EB.

I would value opportunities to exchange experiences and knowledge with other families living with EB. 1

I would value opportunities to exchange experiences and knowledge with other families living with EB. 2

I would value opportunities to exchange experiences and knowledge with other families living with EB. 3

I would value opportunities to exchange experiences and knowledge with other families living with EB. 4

I would value opportunities to exchange experiences and knowledge with other families living with EB. 5

I follow and/or take part in conversations about EB in online forums.

I follow and/or take part in conversations about EB in online forums. 1

I follow and/or take part in conversations about EB in online forums. 2

I follow and/or take part in conversations about EB in online forums. 3

I follow and/or take part in conversations about EB in online forums. 4

I follow and/or take part in conversations about EB in online forums. 5

I follow and/or take part in conversations about EB on blogs.

I follow and/or take part in conversations about EB on blogs. 1

I follow and/or take part in conversations about EB on blogs. 2

I follow and/or take part in conversations about EB on blogs. 3

I follow and/or take part in conversations about EB on blogs. 4

I follow and/or take part in conversations about EB on blogs. 5

I regularly socialise with other families living with EB where we exchange experience and knowledge.

I regularly socialise with other families living with EB where we exchange experience and knowledge. 1

I regularly socialise with other families living with EB where we exchange experience and knowledge. 2

I regularly socialise with other families living with EB where we exchange experience and knowledge. 3

I regularly socialise with other families living with EB where we exchange experience and knowledge. 4

I regularly socialise with other families living with EB where we exchange experience and knowledge. 5

I feel well informed about online communities/forums/blogs that talk about EB

I feel well informed about online communities/forums/blogs that talk about EB 1

I feel well informed about online communities/forums/blogs that talk about EB 2

I feel well informed about online communities/forums/blogs that talk about EB 3

I feel well informed about online communities/forums/blogs that talk about EB 4

I feel well informed about online communities/forums/blogs that talk about EB 5

I think DEBRA should do more to publicise online networking opportunities for families living with EB.

I think DEBRA should do more to publicise online networking opportunities for families living with EB. 1

I think DEBRA should do more to publicise online networking opportunities for families living with EB. 2

I think DEBRA should do more to publicise online networking opportunities for families living with EB. 3

I think DEBRA should do more to publicise online networking opportunities for families living with EB. 4

I think DEBRA should do more to publicise online networking opportunities for families living with EB. 5

I think DEBRA should create and run an online forum for families living with EB.

I think DEBRA should create and run an online forum for families living with EB. 1

I think DEBRA should create and run an online forum for families living with EB. 2

I think DEBRA should create and run an online forum for families living with EB. 3

I think DEBRA should create and run an online forum for families living with EB. 4

I think DEBRA should create and run an online forum for families living with EB. 5

Question Title

* 2. Which of the following online communities (forums/blogs) that talk about EB have you heard of?

Facebook EB Lounge

RareConnect

RareShare

Johnny Kennedy North East Forum

irefuseeb.org

EB Info World

Other (please specify)

Communications survey 2016

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* 1. Think about the information you receive and exchange about EB, treatments, everyday life with EB and research. How strongly do you agree with the below statements? (1 = strongly disagree, 5 = strongly agree)

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* 2. Which of the following online communities (forums/blogs) that talk about EB have you heard of?

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* 3. When you think of DEBRA, what are the first words that come to mind?

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* 4. Why do you continue to be a member of DEBRA?

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* 5. How do you think DEBRA is different from other charities?

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* 6. If you were describing DEBRA to people who have never heard of it, what would you say?