01. Why is this insights study so important?

The EB insights study will help ensure that the services and support that DEBRA offers to the EB community is in line with the key needs of the EB community. The insight will also help us to understand the most important issues affecting the EB community today and thus provide the focus to lobby for change tomorrow. The insights will also influence what research we fund in the future to find treatments and cures for EB. This project will provide  the information and evidence we need to strengthen how we advocate for people living with EB to politicians, GPs, schools, local authorities – all the people who can help make the changes needed to help people live better with EB.  In short it will help determine where our strategic focus should be as a charity to deliver the most for our members and the wider EB community.

The more people who take part, the more representative it will be of the whole EB community. It is so important that we hear from people with all different types of EB, from different backgrounds and areas of the country, from people living with the condition to those people caring for or working with those with the condition, so that DEBRA can represent everyone affected by EB.  It will be repeated every 2 years, so that we can respond to the changing needs of the community, and understand our progress better.