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Using your DEBRA membership

 

We offer a wide range of exclusive benefits and support for our members – people of all ages living with or directly affected by all types of EB in the UK.

On this page, you’ll find information about everything you can access now you’re signed up to help you make the most of your DEBRA membership.

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Support for people with all types of EB

Our EB Community Support Team is here to support you through every stage of life with EB. From initial diagnosis to supporting you in employment, to helping you get a Blue Badge or having the assistance you need when travelling through airports.

Our team offers a listening ear, expert guidance, and practical support when you need it. You can also use our website’s EB information and resources, and call our EB Help Line on 01344 577689, available Monday-Friday, 8am-5:30pm.

Meet the EB Community Support Team

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Community connection and events

We offer a range of exclusive events for members throughout the year, giving you a chance to connect with others in person or online.

Share experiences, hear from EB experts, discuss topics that matter to the EB community, and simply enjoy spending time together and making new friendships.

 

 

See our upcoming events

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Exclusive holidays

Enjoy stays in our beautiful range of holiday homes, based around the UK in award-winning 5* parks, at highly discounted rates.

To help remove some of the stress associated with holiday planning for families living with EB, we have, where possible, adapted our holiday homes to meet the diverse needs of the EB community. 

View our holiday homes

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Involvement opportunities

We put our members’ voices at the heart of everything we do, and there are loads of exciting ways to get involved.

You can take part in exclusive member projects, help shape the future of our EB services, decide what research we’ll fund next, and lots more.

See how you can get involved

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Financial support

Get grants for items to help you live better with EB, financial guidance, and our team’s expertise to help you access government benefits you may be eligible for.

Visit our benefits and finance page

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Be the first to know

With our emails and print newsletters, you’ll get the latest news and resources for people with EB and hear about new treatments when they become available. You can also access all EB information and resources any time.

EB support and resources

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Additional resources

Download or request other useful resources for people living with EB and their families and carers:

‘I have EB’ card

EB medical card

Books by the EB community

Hidden Disabilities Sunflower ID card and lanyard

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Know anyone else living with EB who isn’t already a DEBRA member?

The more members we have, the easier it is for us to:

  • Show the true incidence of EB, so we can prove how many people are affected.
  • Advocate for better research and secure funding to repurpose drugs and find new treatments.
  • Lobby with the government, NHS, and other organisations to improve services and rights for people with EB.
Refer someone to membership

If you can’t find the information you need or you’d simply prefer to talk to someone, please contact us, we’re here to help. 

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