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  1. About us

Who we are


Staff members of DEBRAs Research and Member Services teamsStaff members of DEBRA's Research and Member Services teams during Members Weekend 2023. 

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 3,500+ 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 375 staff and 1,100 volunteers who support us across a network of 100+ charity shops located throughout England and Scotland.


What we do

Infographic with several stats about DEBRADEBRA 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

Infographic with several stats about DEBRAWe 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.

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: 30th May, 2023

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: 22nd March, 2023

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: 14th September, 2023

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: 27th March, 2023

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: 18th October, 2023

Author:

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: 30th May, 2023

Author:

ESG - Environmental, Social and Governmental

ESG - Environmental, Social and Governmental

At DEBRA, we are working hard to become a more sustainable and environment-friendly organisation in everything we do and everyone we work with. Read more

Published: 7th November, 2022

Updated: 22nd March, 2023

Author: Tilda Kusmishko

Our partners

Our partners

At DEBRA we are proud to work in partnership with healthcare, research, and corporate partners across the UK and internationally. Read more

Published: 25th July, 2023

Author: Tilda Kusmishko

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Latest

  • Dine with DEBRA lunch aboard the Fingal, Edinburgh raises £20,000

    Dine with DEBRA lunch aboard the Fingal, Edinburgh raises £20,000

    We’re thrilled to announce our dine with DEBRA lunch aboard the floating Fingal hotel in Edinburgh has raised £20,000 towards our A Life Free of Pain appeal.

  • Your feedback is vital

    Your feedback is vital

    We welcome your feedback. Please let us know if you have any suggestions for improvements to our EB information. We’d also love to hear from you if you think we are doing something well.

  • DEBRA Fight Night 2023, hosted by Frank Warren, raises over £180,000

    DEBRA Fight Night 2023, hosted by Frank Warren, raises over £180,000

    We're delighted to announce that our annual Fight Night event has raised over £180,000 to help #FightEB, making it DEBRA's most successful Fight Night in 15 years!

  • DEBRA SLT members meet with Jennie Minto and Bob Dorris at Scottish Parliament

    DEBRA SLT members meet with Jennie Minto and Bob Dorris at Scottish Parliament

    We took a further step on our government campaigning journey today (Wednesday 22nd November) with a meeting held at the Scottish parliament with Jennie Minto MSP for Argyll and Bute and Minister for Public Health and Women's Health in Scotland, and our meeting sponsor, Bob Dorris, MSP for Glasgow Maryhill and Springburn.

Most read

  • 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.

  • 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.

  • Items we do not sell

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

  • Graeme Souness swimming the English Channel  to raise £1.1m to stop the pain of EB

    Graeme Souness swimming the English Channel to raise £1.1m to stop the pain of EB

    Graeme Souness, ex-international footballer, manager, and pundit, is swimming the English Channel this June to raise £1.1m to stop the pain of epidermolysis bullosa (EB).

  • 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.

  • Contact Us

  • 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.

  • Imagine your skin being in constant pain? No one should have to live like this

    Imagine your skin being in constant pain? No one should have to live like this

    Imagine a dozen surgeries in less than a decade? No one should have to live like this. Please help us find treatments to #StopThePain.

  • Become a member

    Become a member

    If you or a family member live with EB, are a carer or someone who works with people affected by EB, then you can become a DEBRA member. Find out how.

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Alternatively, become a member to receive information tailored for people living and working with EB. 

 

 

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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).  © 2023
Registered office: DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ

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