The Helix Centre

We have teamed up with The Helix Centre, part of Imperial College London, to codesign a product that will improve quality of life for people living with EB. It could be anything, like an item of clothing, a household gadget, or something to help you with journeys when you’re out and about.

Find out more

Sign up here 

Jump straight to the current stage of the project

 

Stage 1 – survey complete:

We started by taking the key challenges that people living with EB face from DEBRA’s EB Insights study from 2023.  We then designed a survey with our members to understand which challenges our members would like this product to focus on. The survey revealed that our members would like to focus on overcoming pain and itch while moving around. Now we start to narrow this down.

 

Stage 2 – interviews complete:

We interviewed over 10 members and healthcare professionals to get more in-depth context around these challenges. These interviews have helped us narrow down our focus further, and with the help of another small group of members, we’ve narrowed our questions to explore further to:

How might we support safe play, development and independence in the home for people growing up with EB?
How might we improve the dressing change procedure to make it faster and less painful?
How might we make it easier for people with EB to customise their surroundings with a soft coating?
How might we help people with foot pain walk more comfortably for longer?

 

Stage 3 – the workshops:

These key questions will be developed with our members at Members’s Weekend 2024. And we will develop them further during online workshops on June 5th and 19th. If you are a DEBRA member and would like to join us for these online workshops you can sign up here 

Sign up here 

 

Stage 4 – developing a prototype:

This is when we start getting practical and designing a real product with our members’ help.

  

Sign me up

If you would like to take part at some stage of the Helix project, please sign up by clicking the button below, and we’ll keep you up to date.

Sign up here

Alternatively, please contact 01344 771961 and use option 1 or [email protected]

We can’t do this project without our members, so we hope you can join us to share your insights and experience that will help us produce the best product possible for the EB community!

 

More about the Helix Centre’s work

The Helix Centre has already completed some great projects for various healthcare causes. One of their current projects, is working on a way to improve first outpatient appointment attendance for people who have unequal access based on their ethnicity and level of deprivation. To achieve this, they are working with members of the public from these groups to identify barriers they face and co-design ways to support people to attend their appointments. They will then test which approaches have the greatest impact in a research study and review the best methods to achieve this!

We can’t wait to work with you to come up with our very own product for the EB community!