The aim of this event dedicated to research was to set up collaborative research among researchers interested in Cutis Laxa, worldwide. It was also to ask patients to work together with researchers to let them know what main topics they would be interested in.
Pr Callewaert presented the main challenges, strength and weaknesses Cutis Laxa represents. Then Dr Jens Detollenaere talked about how patients’ participation is organised as partnership in research in Belgium
After working in 2 groups (clinic and research, and patients) with those interested in taking part in the research collaboration, we reported our work in a general session.
We ended this working day on research collaboration with the decision to set up an International Research Consortium on Elastic Fibers including a Patient Advisory Board. What a Success !!!!