Debra Ireland has had a dedicated resource to drive research into better treatments and ultimately a cure for people living with EB for over ten years. I joined the team at Debra Ireland as Research Manager just over a year ago to do just this. My role is very varied covering many areas of research including:

EB Registry

DEBRA Ireland is currently leading an exciting project to develop the first Irish EB Patient Registry. A registry records, stores and analyses relevant data about the health and medical treatment of people with EB in Ireland. By collecting and analysing information on all people with EB in Ireland, we can better understand their health and wellbeing and the treatments they receive.

Supporting Research

We support research in a number of ways at Debra Ireland including:

• • Fund Irish and international scientific research that have the potential to deliver treatment for EB in the future.
  • Participate in scientific research projects as a patient organisation to give insights to the research on what is beneficial to the patient and to provide a link to people living with EB.
  • Perform advocacy studies, such as cost of living with EB for families, to support advocacy and lobbying activities.
  • Host research meetings to ensure those in the EB research world are working together

Research for Rare Diseases

Debra Ireland a member of umbrella organisations such as the Medical Research Charities Group and Rare Diseases Ireland, where we work together with other patient organisations on many tasks to avoid duplication and also as a bigger group to lobby agencies for change. For example, training on creating a patient registry or patient and public involvement in research.

Communication

There is a lot going on in the world of EB research. The area has expanded significantly over the past few years with many potential treatments finally undergoing clinical trials. It is essential to ensure that all of our members are up to date on what is going on.

Patient and public involvedment (PPI)

An important project that is kicking off in DEBRA Ireland is ensuring the patient voice shapes everything we do. This is where we will involve people living with EB in many aspects of research to ensure:

• Research is focused on the end goal of a treatment and cure
• DEBRA Ireland’s research priorities are in line with those of the people we represent
• Research is communicated in a simple, effective and interesting way

We don’t just want to send people living with EB updated or feedback from them, we want to go a step further and really involve them in what we do.

Q & A with DEBRA’s Head of Research Sinéad Hickey

What do you love most about your job?

Working with a passionate and motivated team, driven by our families living with EB, who want to make a difference through everything they do.

What would you love to see happening in the world of research?

I would really like to see an effective treatment developed that will have a big impact on those living with EB by treating the underlying condition and not just managing symptoms. There are a few exciting projects in the pipeline, hopefully one of these will be successful in doing that.

If you have EB or are a family member or carer of someone with EB you can get involved as much or as little as your time allows. Simply contact me on [email protected]

Keep an eye on this blog for more detail on some of the exciting projects we are working on. Or if you can’t wait, don’t hesitate to contact me.