Would you like the opportunity to help shape our marketing and communications? We want to make sure that our marketing and communications reflect our members' voice, and you can help!

We will update this page as new roles come up. 

• Help us improve the new DEBRA website 
• Review member information
• Social media champion
• EB Connect

 

Help us improve the new DEBRA website

 

Review member information

We’re improving and expanding all of our information, that we use to support members at different stages of life. We have held several focus groups with our members to help create this information on topics such as employment, benefits, education and many others. Now we are looking for a team of reviewers to take a look at what we've already written, from the input of our members. 

This will be sent via email, and we anticipate that each piece of information to review should take no longer than 20 minutes. You’ll be able to choose how many pieces of information you want to review, and even just one helps! Sign up here and we can send you the information by email. 

So far, our members have played an important role in helping us with updating the information that will appear on our new website by taking part in our pathways project. We have held 11 different focus groups on a series of key life stages, and had the insight of 58 member appearances to help shape and update the information we provide to the EB community.  

 

Social media champion

We have recently welcomed a group of social media savvy DEBRA members to become our first Social Media Champions, to help us turn up the volume on our social media platforms.

Our social media pioneers will be helping us shape the role of social media champions over the next few months, as well as help us create and push our content.  This is a fun and flexible opportunity for Facebook fanatics and casual Insta scrollers alike.

Take a look at the role description below, and join our Involvement Network to be the first to hear when this role opens again.

 

Read our social media champion role description

 

If you have any questions about this role, please contact [email protected].

 

EB Connect

Please help us spread the word about EB Connect on your own social media channels.

We frequently hear from members that they’d like more opportunity to connect directly with others living with EB, to share experiences, top tips and support.  EB Connect is one way that you can do this.  It’s a completely free online forum for people affected by EB.  You can sign up below but please choose DEBRA UK as one of the groups you wish to join.

 

Sign up

 

To help get the brand-new DEBRA UK group up and running, we need your help to spread the work.  Please post about this forum on your social media platforms and encourage those affected by EB to join the DEBRA UK group. Take a look and start connecting with members across the country.

As always we’d love to hear how the forum works for you. Get in touch by emailing [email protected].