At DEBRA Ireland, we prioritise the voices of people living with EB to provide the best support and make the greatest impact. The EB Expert Panel are individuals with EB, family members of those with EB or family members who have lost a loved one to EB. The panel advises the DEBRA Ireland Research and Family Support teams.

The workshops occurred in person last November, with an online version taking place at a later date for those unable to attend. This workshop is envisioned to occur twice a year, allowing the panel to have their voice heard within various DEBRA projects. This is known as Patient and Public Involvement (PPI) and improves the quality of work DEBRA Ireland do for the EB community in Ireland and worldwide. It allows the ever-changing needs of this community to be at the forefront of our team’s minds as they work towards improving the quality of life of those who live with EB in Ireland.

“It was lovely to finally meet people, chat and talk about EB and the need of patients.” – a member of our wonderful EB Expert Panel.

Research

As a result of the panel, DEBRA Ireland’s revised research priorities include:

  • Wound Healing
  • Pain Management
  • Gene Therapy
  • Medical Devices – with a particular focus on an EB shoe
  • Psychosocial/Mental Health studies
  • Cell Therapy

And the research we fund/support must have direct patient impact by either…

  • Furthering the development of a potential treatment
  • Identifying potential targets for a potential treatment
  • Contribute to the overall knowledge of EB to help develop future treatments
  • Improve quality of life for those with EB and their families

Family support

Our Family Support Team had a number of specific projects they wanted the panel to provide input on for the coming year, like developing an Online EB Hub. The EB Hub will be an online platform where families will be able to easily access information and support on EB. The platform will be shaped collaboratively with the panel.

The psychological and social impact of EB has shaped the decision to create a support hub for EB in Ireland, as the Family Support team recognise there are many more aspects of life that can be impacted by EB in addition to the physical challenges. It is hoped that the Hub will provide quick and easy to access supports, while being modern and simple to use.

You can download the full report here