Skip to content

Marketing and communications roles for members

A lit light bulb with the word "idea" inside it on a teal background.

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 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.

 

Letter if you have a store nearby

Letter if you do not have a store nearby

 

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.

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 feedback@debra.org.uk.

Logo of DEBRA UK. The logo features blue butterfly icons and the organization's name. Underneath, the tagline reads "The Butterfly Skin Charity.
Privacy Overview

This website uses cookies so that we can provide you with the best user experience possible. Cookie information is stored in your browser and performs functions such as recognising you when you return to our website and helping our team to understand which sections of the website you find most interesting and useful.