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  1. About us

Who we are


DEBRA member events


DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had Epidermolysis Bullosa (EB), as the world’s first patient support group for people living with EB.

Find out more about DEBRA’s history.

Today DEBRA UK is a national charity supporting 3,000+ members, which includes people living with EB, relatives, partners, or carers of someone with EB, healthcare professionals and researchers who work with EB.

DEBRA UK employs over 350 staff and 1,000 volunteers who support us across a network of 100+ charity shops located throughout England and Scotland.

Infographic with several stats about DEBRA


What we do

DEBRA UK exists to provide care and support to improve quality of life for people living with EB, and to fund pioneering research to find effective treatments and, ultimately cure(s) for EB.

Our vision is for a world where no one suffers with EB, and we will not stop until this vision becomes a reality.

From discovering the first EB genes to funding the first clinical trial in gene therapy, we have played a pivotal role in EB research globally and have been responsible for making significant progress in advancing diagnosis, treatment, and daily management of EB.

We are committed to making sure that the estimated 5,000+ people living with EB in the UK and their families and carers get the vital and wide-ranging support they need.

The income we generate from our fundraising activities and our network of charity shops, enables us to provide care and support to improve the quality of life for people living with EB today, and fund pioneering research to find treatments and cure(s).

Find out more about how we raise and spend money.


Specialist healthcare

We support specialist healthcare by working with the 4 national EB centres and over 60 EB healthcare professionals including specialist EB nurses to ensure our members are connected with the services they need to improve their quality of life.

 
Community support

Through our community support team we deliver a variety of support services for the EB community including general information about EB plus support with any issues impacting everyday life including benefits and grants, advice for employers and schools, housing, emotional support and much more.


Research to find treatments

We invest in life-changing research and are currently funding 19 research projects with the aim of finding treatments to significantly reduce the devastating symptoms and pain of EB whilst we work towards finding a cure.

Find out more about our research program.

Infographic with several stats about DEBRA

 

Our history

Our history

DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had Dystrophic EB – the charity was the world’s first EB patient support group. Read more

Published: 17th March, 2016

Updated: 4th August, 2022

Author:

Our values

Our values

Our values provide a set of common beliefs, behaviours and understanding to support and enable us to work collectively to achieve our mission. Read more

Published: 2nd August, 2016

Updated: 3rd August, 2022

Author:

Our strategy

Our strategy

Together, over the past 40 years, we have achieved a lot and have a proud history. We were the first organisation in the world established to focus on EB. Read more

Published: 15th September, 2020

Updated: 4th August, 2022

Author: Wendy Garstin

Our policies

Our policies

All of our policies can be found here on our website, which covers the different areas of our work. Read more

Published: 15th November, 2021

Updated: 3rd August, 2022

Author: Stephanie Webb

Our reports

Our reports

Find out what we've achieved over the past year and how we've put your money to good use supporting people living with EB. Read more

Published: 16th November, 2021

Updated: 3rd August, 2022

Author:

The DEBRA Effect

The DEBRA Effect

We believe that anyone can fight EB with one small action and spread ripples of hope for people living with EB, so that one day, EB no longer has any fight left to give. Read more

Published: 17th December, 2021

Updated: 4th August, 2022

Author: Ailsa Winter

Equality, Diversity & Inclusion

Equality, Diversity & Inclusion

For a community to thrive, every member needs to feel valued, listened to, respected, welcome and represented. Read more

Published: 7th January, 2022

Updated: 3rd August, 2022

Author: Stephanie Webb

How we spend our money

How we spend our money

Find out how DEBRA fundraises and the activities that its fundraising supports. Read more

Published: 11th July, 2022

Updated: 9th August, 2022

Author:

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Showing 10 of 8

Latest

  • Corporate Case Studies

    Corporate Case Studies

    From skydiving to Tough Mudder races, we are so grateful for the lengths our corporate partners go to to support DEBRA and the EB community.

  • Emergency heatwave appeal

    Emergency heatwave appeal

    With the high temperatures set to continue, we need your help. We are aiming to raise £10,000 to help stop the pain for people living with EB.

  • Emergency heatwave appeal

    Emergency heatwave appeal

    With the high temperatures set to continue, we need your help. We are aiming to raise £10,000 to help stop the pain for people living with EB.

  • The science behind EB research

    The science behind EB research

    Knowing a bit more about the science behind EB research can help to understand the research that we are funding and how it might affect DEBRA UK members.

Most read

  • Furniture collection

    Furniture collection

    Donate your unwanted furniture, homewares and electrical items using our free furniture collection service. With safety measures in place, donating your items couldn’t be easier.

  • Find a store

    Find a store

    Find your nearest DEBRA charity shop and help fight EB. Our stores sell affordable and quality pre-loved clothing, furniture, electrical items, books, homeware and more.

  • Items we do not sell

    Find out what health and safety standards and labels we require and which items we cannot sell.

  • Contact Us

  • What is EB?

    What is EB?

    Epidermolysis Bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.

  • Donate items

    Donate items

    Donate your quality pre-loved items, including clothes, furniture and homeware to keep them from landfill and help us to raise vital funds through our stores. Find out more about how to donate items today.

  • Work with us

    Work with us

    DEBRA can only continue its vital work with the support and encouragement of the local community and with the hard work of its employees and volunteers.

  • Who we are

    Who we are

    DEBRA is the national charity that funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa (EB)

  • Greenwich

    Greenwich

    17/23 Woolwich Road, Greenwich, London, SE10 0RA
    Tel: 0208 858 5194
    Wheelchair access Furniture collection Furniture Clothing Books Homeware Electrical items

  • Dystrophic EB (DEB)

    Dystrophic EB (DEB)

    Can be mild or severe (dominant or recessive). The defective gene and fragility occurs below the basement membrane within the superficial dermis.

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DEBRA is registered as a Charity in England and Wales (1084958) and Scotland (SC039654).

Company limited by guarantee registered in England and Wales (4118259).  © 2022
Registered office: DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ

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