Also known as Public and Patient Involvement (PPI) in research, this means research carried out “with” or “by” those impacted by a condition such as EB, rather than “to”, “about” or “for” them.
In November 2022 we launched our EB Expert Panel, a group made up of those who understand EB the most and are willing to use their experience to help shape our work.
The panel advise us on various topics related to what living with EB in Ireland is like now and what it should look like in the future. With their help, we can make sure we provide support in the way that matters to them.
Participation is voluntary but, as a valued advisor to our team, every member of the panel and os reimbursed for their time.
The Panel meets 2 or 3 times a year as a group. In between meetings, participants stay connected with Debra through one-on-one conversations with members of our team.
We know that there is power in numbers. The more voices we have, the stronger our work will be.
Research is one of the vital areas that needs direction from EB Experts to ensure that the resources we invest in research are making the greatest impact and meeting the needs of those impacted by EB. This will improve the quality of the work we do for people with EB in Ireland and worldwide.