What is Advocacy?

The term advocacy means different things to different people. From DEBRA Ireland’s perspective, we use it to describe the work that we do to encourage positive change for people who live with EB.

We work to understand the issues that have (or have the potential to have) a negative impact on families who live with EB. We then take steps to highlight and explain these issues to key decision makers and to encourage positive action to bring about improvements. When the decision makers are politicians and state officials, the process is referred to as lobbying. In addition to lobbying however, we also talk to other decision makers such as senior people in the HSE and hospital management.

• On average we attend up to 500 hours of meetings each year fighting for EB patients’ rights
• We know the best way to educate people about EB is by using the media cleverly. Last year we had 250 articles published and aired including EB Awareness Day
• Each year about one third of EB patients ask DEBRA for help with medical entitlements

Gathering information through the EBCare registry, will be essential to all aspects of our advocacy work. Having solid evidence is an invaluable tool in any advocacy campaign and ultimately we hope that the information gathered by the registry will also be central to persuading the government to pay for future treatments for EB.

It can be a challenge to categorise our advocacy work into neat boxes but the pages in this section give an overview of our main areas of focus. Much of our advocacy work complements our efforts in patient care, research and in building awareness.

We are always extremely keen to get input on our advocacy efforts. If you have any thoughts or questions, please get in touch with Avril Kennan in DEBRA Ireland.