Skip to content

EB support and resources

In this section you’ll find information and resources to help raise awareness of EB as well as support for the EB community. Please use the tabs below to see the information organised by topic or lifestage.

If you are living with EB and would like more specific information and support, please contact the EB Community Support Team. You can also contact us for any other queries.

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.

Four people stand outdoors, each holding a colorful speech bubble above their head.

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.

On a table sits an open book with a pen resting on its pages, alongside a notebook filled with handwritten notes. In the background, a blurred bookshelf.

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.

Chefs in a dimly lit kitchen meticulously prepare food and organise plates under the soft glow of hanging lights.

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.

A sign reading "EMERGENCY" adorns the exterior of a red-bricked building.

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.

Silhouette of a person sitting at the edge of a structure, overlooking a landscape at sunset.

Emotional wellbeing

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

Railroad tracks extend into the distance under a partly cloudy sky, with the sun setting on the horizon.

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.

Two women and a child play together on a colorful blanket in a park with cherry blossom trees.

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.

A person jotting down notes beside an array of instruments, including a digital blood pressure monitor and a pulse oximeter.

Health

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

The Windermere Holiday Home in the Lake District features a charming wooden design, a spacious deck, and is surrounded by trees and gardens filled with diverse plants under a partly cloudy sky.

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.

A key is inserted in a door lock, while two additional keys dangle from the same keyring. The door is partially open, revealing a blurred green outdoor background.

Housing help

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

A doctor in a white coat offers support, gently holding a patient's hand across a pristine table, with a clipboard resting beside them.

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.

A little girl joyfully plays among large soap bubbles while surrounded by people during a DEBRA UK members' event.

Peer support & events

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

A medical professional carefully cuts the bandage off a person's leg on a blue sheet-covered surface.

Treatments & management

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

Two people sitting at a table and having a conversation about work.

Accessing social care

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

A doctor in a white coat with a stethoscope around the neck is holding a smartphone.

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.

A person types on a laptop at the table, with a smartphone and an open notebook within reach.

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.

Three pairs of feet on a rock tell a family story: adult sandals, child's sneakers, and adult sneakers. A pair of small baby shoes nestles between them.

Family planning

A woman is cradling a newborn baby in her arms.

Childhood

Five young adultsstand against a railing, casually dressed, each absorbed in their phones.

Young adults

A family of four crosses the street, with a woman holding a baby and man walking beside her with a young girl.

Adulthood

Railroad tracks extend into the distance under a partly cloudy sky, with the sun setting on the horizon.

End of life