Jimmy Fearon and Avril Kennan, of DEBRA Ireland, visit the EB House in Salzburg, Austria - leaders in research and patient care
Jimmy Fearon and Avril Kennan, of DEBRA Ireland, visit the EB House in Salzburg, Austria – leaders in research and patient care

DEBRA Ireland has a long history in driving and supporting research with the potential to improve the lives of people living with EB. While there is currently no cure for EB, we are working hard to change that and believe that children born now will benefit from treatments which will lessen the impact of the condition.

In our efforts to do that, we do much of the obvious:

  • funding EB research
  • Supporting the scientists that undertake EB research
  • Identifying new EB research opportunities

We also do much of the not-so-obvious:

  • Advocating and lobbying for improved research funding and structures in Ireland (see more on this in the Advocacy section)
  • Helping to populate an EB patient registry, EBCare, which will be of immense value for research
  • Working on behalf of DEBRA International to communicate developments in research, to people in Ireland and around the world, through video and newsletters.
  • Maintaining a database of current EB clinical trials
  • Working with DEBRA International to develop clinical practice guidelines

 

Research funded by DEBRA Ireland

The DEBRA International executive committee (and friends), at the DEBRA International Congress meeting in Toronto, November 2012.
The DEBRA International executive committee (and friends), at the DEBRA International Congress meeting in Toronto, November 2012.

Over the years DEBRA Ireland has funded many research projects. In recent times we have funded research in four high-profile centres; Trinity College Dublin, National University of Ireland Galway, Queen Mary’s Hospital London and Stanford University USA. This research has focused on a variety of different approaches to understanding and treating EB, including a form of wound dressing, gene therapy and treatments for the aggressive form of skin cancer that is such a risk for severe EB patients.

We currently contribute funding towards the research of Dr. Wenxin Wang in NUI Galway. Wenxin and his team are researching a healing skin substitute for EB which you can learn more about here.

To learn more about our long-standing and valuable relationship with Professor Edel O’Toole and her research into EB skin cancer, click here.

While we have long been focused on biomedical research aimed at developing treatments and cures, we also believe that it is essential to undertake research that focuses on the impact that EB has on a family and on the support systems available to them. To this end, we have partnered with the Occupational Therapy Discipline in the University of Limerick, to undertake a study exploring the health and social care support systems for those living with EB in Ireland. We believe that the outcomes of this study will be useful in supporting our advocacy campaigns and in helping to formulate future strategy.