This stage of the study is now closed.

People who took part were asked about various topics to help us gain a better understanding of the impact EB has on their life as well as information and support they have found useful.

They were asked about the following: 

  • how EB affects their day-to-day life
  • their diagnosis and symptoms
  • the contact they have had with medical professionals and how this has impacted their day-to-day life 
  • the treatments they take (or have taken in the past)
  • the impact of EB on their mental health
  • any support or additional care they have received for EB
  • their aspirations for the future
  • challenges they may face.

This study will help us access the right services for people with EB today and understand the most important issues to lobby politicians for support and funding for EB to change tomorrow. The results of the research will also play a vital part in deciding what campaigns we run and what research we fund. It will determine what we do and how we do it.