As well as funding research to find treatments and cures for EB in the future, DEBRA supports those affected by EB today.  Our Community Support Team works with families and individuals at all stages of life, providing financial, emotional, and practical support and signposting.  We provide grants to make it easier for our members to have the things they need to live better with EB.  We offer our members subsided holiday homes as safe places to take a break.  And we put on events that allow members to connect with each other.

There are many teams and projects at DEBRA that underpin this work and make it possible to provide this support.  We try and ensure that all our work has members at the centre.  Please use your lived experience of EB to influence the projects below and ensure that DEBRA is always here for you.

The projects below often change, so please keep checking back.

 

• Shape DEBRA's support for the over 60's
• Review DEBRA International's leaflets
• Improve our educational pathways
• Become a trustee

 

Shape DEBRA's support for the over 60's

We are running a focus group on Friday 1st December at 2pm for an hour, exclusively for members aged 60 and over, to talk about the support DEBRA should provide to our members aged 60+.

 

Join the focus group

 

As part of a wider project mapping the support we provide to members at all life stages, this focus group will cover areas like how we can best support people in planning for retirement, and how DEBRA can adapt support if other health conditions arise.

These are just a couple of examples, but we’d like to hear from you about the areas of life, now and in the future, that you think DEBRA could play more of a role in.

 

Review DEBRA International’s leaflets 

DEBRA International – the central body of the international network of DEBRA’s around the world – produce information leaflets for people who are either living with or caring for somebody with EB, or for healthcare professionals working with people affected by EB. These are guidelines to show the sort of care and treatments that people living with EB should expect to receive.

As an EB expert by experience, you can review this information and provide DEBRA International with feedback that will improve those documents for everyone living and working with EB.

Get involved | DEBRA International (debra-international.org)

 

Help us improve educational pathways

We support members with accessing education at all stages.  We want to make sure that all our members can get the most out of their education, regardless of their EB type.  And we want to expand our role in educational pathways, to ensure that we’re doing all we can for all our members.

Join our team as we map out where DEBRA can have the biggest impact on educational pathways.  This would involve talking to members of the Community Support Team, online or over the phone, and joining a meeting (most likely virtual) with DEBRA staff, to use your lived experience of EB to shape how we’re thinking about educational support for members.

If you are a member and interested in getting involved in this project, please email [email protected]. 

 

Become a trustee

Over 50% of DEBRA’s Board of Trustees are people with lived experience of EB, either living with the condition themselves, or close family members and carers.  We are always looking for members who are interested in being a part of our Board or one of our Committees to help steer DEBRA and guide the decisions we make.  We look for a mix of skills and experiences from the people on these committees, but you don’t have to have carried out a board-level role before.  Your lived experience of EB is vital to ensure that we’re keeping members’ experiences at the heart of what we do. 

Find out more about how we are governed and how to apply to become a trustee.