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Marketing and communications roles for members
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.
Our new DEBRA UK website officially launched in October 2024, designed to make it easier for the EB community to find the support and guidance you need.
Before the official launch, a team of member reviewers took part in testing out the site and providing feedback. This feedback has been instrumental in shaping the site, whether through testing the navigation, providing insight into functionality, or suggesting areas for improvement.
We received a lot of great feedback from our team of reviewers, and several of our member suggestions have already been implemented, while others have sparked new ideas for future developments. Having member insight not only helped us address key issues but also ensured that the website is more accessible and user-friendly.
Below is a summary of some of the key feedback and actions we have taken:
| Members Said | Action taken |
| Search bar difficult to see (reported several times) | Redesigned the search bar, increasing size and contrast. Improved visibility and user accessibility |
| Contact details should be on the main page | Added phone number and email to the footer |
| “Hope it includes Scotland’s events” |
Scotland events section added. Now fully operational |
| “Pet policy unclear” | Each holiday home now has specific pet policies listed |
| “I have EB card difficult to find” | Improved search tool to return relevant results |
Thank you to all our members who contributed, this insight has been invaluable in refining our website!
Help us get the attention of your local MP/MS/MSP and ensure they are aware of EB and the challenges that people living with all types of EB face daily.
To bring EB to their attention and to encourage them to support our drive to improve local EB healthcare services, we would be grateful if you could write to, or email, your local MP/MS/MSP and ask them to meet with you.
To make it easy for you we have created a template letter for you to use. There are two versions, depending on if you have a DEBRA UK store in your constituency. If you need to check, you can find your nearest store here.
You can find out who your local politician is and how to contact them by visiting:
We need support from many different people to ensure you have the adequate healthcare support you need today and effective treatments for tomorrow. Local and national government can help us achieve this, so if you can find the time, please do get involved. Just by writing a letter you can BE the difference for EB.
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.
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.
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 feedback@debra.org.uk.