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Our research impact

Isla who has DEB with her dad

What I hope for EB research is to make what was once impossible, possible. I want a brighter future for Isla; I want a cure to happen in her lifetime.

- Andy & Isla, DEBRA Members

Our research impact report

Here at DEBRA UK, Andy & Isla's goals are also our goals. By downloading your own copy of the DEBRA UK Research Impact Report 2021, you can become familiar with the impact of Epidermolysis Bullosa (EB) on the lives of thousands of UK children, men and women as EB researchers strive to find a cure.

Discover:

  • The scope of people affected by this debilitating skin disease;
  • Our positive outlook on a future free from EB;
  • Specialist healthcare and services available to EB patients and families;
  • Commitment to quality research on behalf of EB patients and families;
  • And much more! 

DOWNLOAD THE 2021 REPORT

 

How will I know whether the research DEBRA UK is funding will help me and other members?

Scientists, doctors and nurses do their best to find treatments and compare them to each other to find out what works best; but some studies are better than others. We ask EB expert researchers and people living with EB to help us choose which research studies to fund. We can get an idea of how good a specific study is by asking questions like:

  • How many people are in the study?
  • Is the study randomised?
  • Is the study double-blind?
  • What will the results of the study tell us?
  • How long will it take to complete the study?
  • Has this been studied before?

 

We'd love to hear from you!

We want to hear the voices of families living with EB to help us decide which research projects to fund.

If you would like to let us know your thoughts about our research or would be happy for us to contact you to ask for your opinion on what research we fund, please leave your details here.

Published: 12th May, 2022

Updated: 13th May, 2022

Author: Tilda Kusmishko

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  • How long does EB research take?

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    Our long-term goal is to achieve a world where no one suffers with EB but this will be fought in many smaller battles.

  • What is scientific research on EB?

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    Scientific research is the best way we can try to find out what can make a difference to the symptoms of EB.

  • What type of research does DEBRA UK fund?

    What type of research does DEBRA UK fund?

    To decide which research projects should be funded by DEBRA UK, we have four areas that we think will be most likely to help families suffering with EB.

  • Apply for funding

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    DEBRA UK provides scientific or medical research funding opportunities in any field relevant to the many symptoms of EB.

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    Our ambition is to find and fund treatments to lessen the day-to-day impact of EB, and cures to eradicate EB.

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

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    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.

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    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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