The Irish YEEP (Experts by Experience Panel) group came together when 22q11 Ireland engaged with an independent mental health researcher Ms Lorna Kerin.
Lorna applied for Irish Research Council funding and received a grant to work with some of our young adults with 22q11.2 deletion syndrome.
We believe that the voice of people with 22qDS had not been heard in this way before and would like it to inform research on services for treatment.
We believe that hearing their voices and lived experiences as people with 22q is as important as any other kind of research. We are immensely proud of them and their commitment to this project.
They have since presented their findings at various meetings and they opened the 22q European Alliance Conference in Trinity College Dublin in October 2017.
We also believe that this type of research with adults as opposed to 'on' people with 22q should be an integral part of developing treatment and management care pathways for the condition.
It is our hope that this small but important Irish initiative will become standard as part of research in the worldwide 22q community and that with this project our YEEP group have paved the way for this to happen.