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EB support and resources

In this section you’ll find information about EB and resources to support you on your journey through life with EB. Please use the tabs below to see the information organised by topic or life stage.

If you are living with EB and would like more specific information and support, please contact the EB Community Support Team.

About EB & DEBRA UK

Learn more about epidermolysis bullosa (EB), also known as butterfly skin. Find also information about DEBRA UK and how we support those affected by EB.

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Explaining EB

Gain insights into the ways we can talk to others about EB, whether it's at school, at work, with friends, or when talking to professionals.

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Learning & education

At every stage of education, there is support available from both DEBRA UK’s EB Community Support Team and other organisations to ensure your child has the right care for their EB needs.

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Work & employment

Learn about work options for people living with EB and their carers. Find out how to navigate the job market and get the support you need.

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Emergencies & urgent care

Be ready for emergencies with our guide for EB patients. Find essential emergency information to keep you and your loved ones safe. In a medical emergency always call 999 or go to your nearest A&E.

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Emotional wellbeing

Boost your emotional wellbeing with practical tips and advice. Find charities and organisations that can provide EB mental health support.

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End of life and bereavement support

Find practical and emotional EB bereavement support for before and after a death, and resources from other organisations that may be able to help.

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Families & carers

Get the information and support you need as a carer of someone with EB. Learn about managing the condition and accessing useful resources.

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Health

Discover the latest insights and tips on EB Health. Stay informed about the best practices for maintaining optimal health and wellbeing.

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DEBRA Holiday Homes

Discover highly affordable and accessible holiday retreats in some of the UK’s most popular and beautiful five-star rated holiday parks.

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Housing help

Housing support for the EB community. Learn about programs and resources that can assist in finding safe and accessible housing solutions.

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Managing medical care

Learn how to navigate the complexities of managing medical care for EB. Get expert tips, advice and support.

Money matters

Living with EB can be a financial burden, but there is advice, benefits, and EB financial support available to help reduce your costs.

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Peer support & events

Discover the benefits of peer support. Connect with others, share experiences, and enjoy exclusive events for DEBRA members.

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Treatments & management

Find out about treatments and management options for EB. Explore strategies to help alleviate symptoms and improve overall wellbeing.

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Accessing social care

Guidance on social care and continuing healthcare, and the support you may be able to receive as someone with EB.

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For professionals

Enhance your professional practice with a wealth of EB resources. Stay informed, gain insights, and connect with other professionals in the EB community.

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Additional resources

Discover additional information, including driving with EB, support for non-UK citizens, living with EB when you are over 60, and books by the EB community.

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Family planning

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Childhood

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Young adults

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Adulthood

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End of life